# Keep Charlie Gard and his parents in your thoughts and prayers.



## Catharinem (Dec 17, 2014)

Charlie Gard's parents have been fighting to try experimental treatment on their baby. Great Ormand St Hospital previously argued that it was not in his best interests, and his life support should be switched off.


2pm today it will go back to court, GOSH has applied to have previous order ( to turn off life support, which they proposed as their preferred action) overturned, due to new evidence supported by 7 leading doctors in the field, that new experimental treatment has a 10% chance of helping Charlie.

Please pray for Charlie 's parents today, to give them strength not only for the decision ( imagine being told your baby's life or death will be decided in a court of law, when all your parental instinct is to protect your baby), but, if it goes in their favour, for the coming battle for Charlie 's successful treatment. There is a 90% chance of failure, even if allowed to try. Pray for their inner peace, knowing they have given all the love and fight they have inside them to their precious son. May their love, strength and dignity be justly rewarded.

Also, pray for the doctors. They may have disagreed with the parents on the best treatment ( or withdrawal of treatment), but they too will have invested emotion in this little lad in his time under their care. They beleived their decision was in their patient's best interest. With new evidence, they are willing to listen and change their stance, rather than insist they know best.

Whichever way the decision goes today, please hold Charlie, his parents and his doctors close in your hearts today.


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## Happy Paws2 (Sep 13, 2008)

Thinking of all involved. 

I have no comment to make on this, as it may be taken the wrong way.


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## SusieRainbow (Jan 21, 2013)

I've been following this closely and my heart goes out to the family. Love and prayers from me whatever the outcome.


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## MilleD (Feb 15, 2016)

Whilst I do feel for this poor family. Are the doctors not fairly sure that this poor little mite is suffering?

I can't even put myself in their shoes, hope they get the strength.

I thought the final judgement had already been made, I didn't realise it was going to court again.


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## LinznMilly (Jun 24, 2011)

MilleD said:


> Whilst I do feel for this poor family. Are the doctors not fairly sure that this poor little mite is suffering?
> 
> I can't even put myself in their shoes, hope they get the strength.
> 
> I thought the final judgement had already been made, I didn't realise it was going to court again.


Final judgement had been made. GOSH has decided to ask the High Court to look again at the evidence, and see if he can undergo experimental treatment, either at the Vatican, or America.

I'm keeping my opinions to myself on this one.


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## cheekyscrip (Feb 8, 2010)

Praying for the little boy and his family.


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## LinznMilly (Jun 24, 2011)

I get updates from Google Newsstand, and, according to the Guardian, his parents have been granted 48hrs to produce new evidence for this treatment.

https://www.theguardian.com/uk-news...me-on-thursday-after-tense-high-court-hearing

Apparently, it only has a 10% chance of working.



> *Charlie Gard's parents given 48 hours to produce new evidence for treatment*
> Mr Justice Francis says it would take 'drastic' evidence for him to change decision not to allow critically ill baby to be flown to US
> 
> *Shares*
> ...


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## rottiepointerhouse (Feb 9, 2014)

Such a sad situation all round, wish I had the answer but I don't, only know it must be so devastating to have the fate of your child dependent on a judge's decision. I pray they find the strength to deal with the outcome what ever that is.


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## picaresque (Jun 25, 2009)

I find the whole circus surrounding this case really distasteful. Donald Trump true to form using a terminally ill baby to score points all the while gleefully stripping millions of his own people of their healthcare. 
Even if Charlie's life can be saved, what sort of life will it be? He has irreversible brain damage and can't breathe unaided. He can't see or hear or move or even swallow. I feel for his parents who are in the worst position imaginable but I trust the opinions of the doctors at GOSH who've been treating him - Charlie should be allowed to go peacefully and with dignity not be undergoing experimental treatment that will probably only prolong the inevitable. Presumably none of us on PF would let an animal suffer like this.


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## Lurcherlad (Jan 5, 2013)

If they decide to allow treatment now at this late stage the long wait will seem doubly cruel. 

My heart goes out to the parents who obviously want to give their child every possible chance, but I do wonder what his quality of life could be 

I wouldn't want to live my life on a ventilator unable to move or communicate.

An impossible position though for the parents and medics involved.


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## Honeys mum (Jan 11, 2013)

Happy Paws said:


> Thinking of all involved.
> 
> I have no comment to make on this, as it may be taken the wrong way.


Same here HP. But I pray that they find the strenght to get through this whatever the outcome is for that poor little boy and his family.


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## Jobeth (May 23, 2010)

I think that the case has been totally misrepresented in the media. GOSH actually applied for ethical permission to use the treatment (that hasn't even been tested on mice for his condition), but when he suffered catastrophic brain damage decided that it was no longer an option. The man that has a child with a similar condition even admits it is not a cure and his child requires round the clock care. I am appalled that so many have trashed the reputation of a renowned hospital for their own political agenda. Charlie is at least not in pain as he is on morphine. GOSH and Charlie's legal guardian have both said that there is no new evidence. I do pray that his parents (who I do feel sorry for) find peace and can accept the judgment this time.

http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case


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## Laney_Lemons (Mar 23, 2016)

Such a sad situation, poor Charlie and the poor parents going through such a hard time however I have to say that I do think it's time to let him go, he's suffering and has no quality of life ... as hard and devestating it is I don't think he should suffer any more. 

Although I'm not a parent and I wouldn't know what I do in that situation so my heart goes out to everyone involved


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## JANICE199 (Feb 1, 2008)

*I think this whole situation is heartbreaking. But i for one believe the family should have the chance to try any treatment available.*
*The idea that anyone can over rule a parents choice is so wrong, especially if the child is not in pain. This is just my opinion and i hope with all my heart, this situation is resolved soon.*


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## rottiepointerhouse (Feb 9, 2014)

It reminds me a bit of the case a couple of years ago of a little boy with a brain tumour whose parents abducted him from I think it was Southampton Hospital and took him abroad for proton therapy treatment he was being denied here.

http://www.bbc.co.uk/news/uk-england-32013634

I think a parents gut instinct is to do whatever they possibly can to try and find a cure for their child and not give up. Having strangers tell you to stop and to give up and let your child die must be intolerable.


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## Jobeth (May 23, 2010)

This is a general observation (and one that I support) - it is enshrined in our law that children are not the property of their parents. That is why decisions can be made when parents disagree with medical professionals with the child's well being the priority. It works both ways as it means children can receive treatment if parents refuse.


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## Guest (Jul 11, 2017)

JANICE199 said:


> The idea that anyone can over rule a parents choice is so wrong,


As a parent, my first choice is to agree with this, but then reality catches up, and I realize there has to be someone there to advocate for the children. Not talking about this case specifically, but in cases where parents refuse life saving treatment like blood transfusions, or even things like vaccines... Children cannot be at the mercy of their parents alone.


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## Nonnie (Apr 15, 2009)

ouesi said:


> As a parent, my first choice is to agree with this, but then reality catches up, and I realize there has to be someone there to advocate for the children. Not talking about this case specifically, but in cases where parents refuse life saving treatment like blood transfusions, or even things like vaccines... Children cannot be at the mercy of their parents alone.


Especially not when you have nutjobs liek this having kids and spreading their BS http://www.independent.co.uk/life-s...-castello-akahi-ricardo-ecuador-a7792841.html

EDIT: they dont force their lifestyle on their kids, but that fact this shit even exists is a worry.


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## Goblin (Jun 21, 2011)

It's a difficult one to be sure but I keep thinking about the good Great Ormond Street Hospital does and has done in the past. It should be noted that they are far from shy about trying pioneering treatment. There is a time to let go unfortunately.

2 things spring to mind for consideration:

We put animals to sleep to prevent them suffering as we love them. Not equating a child with a pet but the background principle is there and is sound.

Trump and the Pope have shown complete contempt for the UK legal system.
The media circus has meant that no matter what happens in the future, additional people will be hurt.


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## Dogloverlou (Dec 8, 2013)

I think it's all rather distasteful now too & IMO quality of life is not being considered here. Very sad for the family concerned and I can understand their desire to want to keep him alive but when Doctors have stated the baby has no chance of recovery & should be allowed to pass peacefully, I think you have to take that on board and follow the advice given.


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## cbcdesign (Jul 3, 2014)

I am not a parent and cannot imagine how painful this must be for Charlie's parents. But this has become a media circus sadly with people wading into the debate who have no medical expertise to even comment on the case including president Trump and the Pope. We must be guided by the professionals in cases like this, not start all out war with them because they are telling us things that are unpalatable and painful. I feel very sorry for Mr Gard and his partner but my feeling based upon what I have read is that its just not meant to be where Charlie is concerned and they will probably have to prepare themselves to say goodbye. We just don't have treatments that can reverse brain damage at this point in time sadly even if treatment halted his condition.


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## Goblin (Jun 21, 2011)

I can say from experience simply being around an incubator or child intensive care unit is emotional. You flinch at every beep wondering if something is wrong even if you know in your mind it's normal as the nurse comes to simply flick a switch/button if even that is required. The effects mentally are long lasting and do not simply go away. Here's hoping support will be available whatever the outcome even when the media circus has died down.


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## havoc (Dec 8, 2008)

My feelings (and they're that and no more) have swung backwards and forwards on this. I think it's about as sad as it gets. We can't know why UK medical professionals have been the way they have but I'm now at the stage I'm unimpressed with them. At first I was with them though feeling very sorry for the parents. Not so long back I was thinking if you go all the way through the courts to prevent parents attempting treatment then the least you can do is let them take their baby home to die. Now it appears they are looking for further clarification because they accept there are experts in this field elsewhere in the world. It's a mess.


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## Siskin (Nov 13, 2012)

I have the feeling the medical personnel are damned if they do and damned if they dont


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## havoc (Dec 8, 2008)

Siskin said:


> I have the feeling the medical personnel are damned if they do and damned if they dont


I think you're probably right but I can't blame the parents for trying. It isn't as though they want to put their child through some invasive treatment.


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## catz4m8z (Aug 27, 2008)

Poor little boy, I hope they can just let him go.
I cant imagine what its like to be a parent in that situation but I do know what its like to watch relatives clutch at hopeless straws whilst a patient is dying a slow, painful and undignified death. No matter the decision I dont think there will be any winners here....


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## cbcdesign (Jul 3, 2014)

havoc said:


> My feelings (and they're that and no more) have swung backwards and forwards on this. I think it's about as sad as it gets. We can't know why UK medical professionals have been the way they have but I'm now at the stage I'm unimpressed with them.


Its not the case that the UK medical team have simply refused to entertain the idea of trying treatment on Charlie out of some sort of professional spite, they simply don't believe that using an untested experimental treatment on a child with very severe brain damage is in his best interests. They also believe he may be in pain and treatment may exacerbate that.


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## Vanessa131 (Nov 16, 2014)

havoc said:


> My feelings (and they're that and no more) have swung backwards and forwards on this. I think it's about as sad as it gets. We can't know why UK medical professionals have been the way they have but I'm now at the stage I'm unimpressed with them. At first I was with them though feeling very sorry for the parents. Not so long back I was thinking if you go all the way through the courts to prevent parents attempting treatment then the least you can do is let them take their baby home to die. Now it appears they are looking for further clarification because they accept there are experts in this field elsewhere in the world. It's a mess.


There were two reasons he couldn't go home, firstly there were concerns the familt would abscond, secondly it would mean Charlie wouldn't be receiving the medical care required to keep him as comfortable as possible. Personally, I would never be unimpressed by someone who puts the patients needs first, a parent willing to put a child through pain just so they can be in a different room shouldn't be the ones making decisions.

They had previously given permission for treatment until Charlie suffered brain damage due to seizures, he at the moment shows almost no brain activity, the developers of the drug have now announced that it can work if the patient is brain damaged, despite having zero evidence of this.


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## havoc (Dec 8, 2008)

I was right there with the medics at the start - hard to know what to think when the story keeps changing. I can't help thinking this would all have been over some time ago if they'd supported the parents in taking him home to die and I don't believe it's beyond medical science for that to happen. Might be expensive but so are lawyers and court - what a waste.


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## Catharinem (Dec 17, 2014)

Goblin said:


> I can say from experience simply being around an incubator or child intensive care unit is emotional. You flinch at every beep wondering if something is wrong even if you know in your mind it's normal as the nurse comes to simply flick a switch/button if even that is required. The effects mentally are long lasting and do not simply go away. Here's hoping support will be available whatever the outcome even when the media circus has died down.


This absolutely. I still struggle to see needle scars on youngest 's groin area when helping her get dressed again after swimming, they are tiny white dots, barely noticeable, but bring memories flooding back. She's 9 now, but I still can't here a certain nursery rhyme tune without welling up, they played it on a little mobile near her cot.

Not going to get into rights and wrongs of treatment, doctors and parents both doing their best, as they see it. Just praying for everyone involved to find inner peace and strength to go forward.


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## cbcdesign (Jul 3, 2014)

havoc said:


> I was right there with the medics at the start - hard to know what to think when the story keeps changing. I can't help thinking this would all have been over some time ago if they'd supported the parents in taking him home to die and I don't believe it's beyond medical science for that to happen. Might be expensive but so are lawyers and court - what a waste.


Well with respect unless you have first hand knowledge of the equipment that is required to keep Charlie as comfortable as possible, how it is connected to suitable power supplies (in other words uninterruptable) and the space required for it your belief is pure speculation and may be totally inaccurate. We just don't have the required medical knowledge or information on his condition to make any such judgements.


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## havoc (Dec 8, 2008)

cbcdesign said:


> We just don't have the required medical knowledge or information on his condition to make any such judgements.


Which is why I made it clear in my first post that it's my feelings and nothing more.


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## cbcdesign (Jul 3, 2014)

havoc said:


> Which is why I made it clear in my first post that it's my feelings and nothing more.


Yes you did none the less you are criticising the medical team on a public forum and I don't think any of us should be doing that, feeling or otherwise unless we have first hand knowledge of what has transpired otherwise we are guilty of adding to the public media circus this has become.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> Yes you did none the less you are criticising the medical team on a public forum and I don't think any of us should be doing that, feeling or otherwise unless we have first hand knowledge of what has transpired otherwise we are guilty of adding to the public media circus this has become.


Surely we discuss all sorts of things we don't have first hand knowledge or experience of it is after all a chat forum.


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## smokeybear (Oct 19, 2011)

Hundreds of such cases occur every year in the UK and so of course we should be praying for ALL such individuals, families, doctors etc etc

This case has just been catapulted to the forefront of attention


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## Zaros (Nov 24, 2009)

There is no greater pain between this earth and heaven, as that suffered by parents who are about to lose, or have lost, a child.

If there's the smallest possibility of a chance to life, who are we to deny a child that right?


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## rottiepointerhouse (Feb 9, 2014)

Not often I find myself agreeing with Sarah Vine but I do agree with this comment she made

http://www.dailymail.co.uk/femail/article-4687374/SARAH-VINE-changed-mind-Charlie-Gard.html

Reading my colleague Robert Hardman's gripping report of the appearance of Charlie Gard's parents at the High Court on Monday, I was struck by his account of the behaviour of Katie Gollop QC, acting for Great Ormond Street.

Pitching her razor-sharp barrister mind against two people clearly weak with grief and exhaustion, she accused them of inconsistencies in evidence and wasting hospital time, as though Charlie's parents were on trial.

Presiding, Mr Justice Francis - who faces an impossible task - did his best to show sympathy for the couple.

But a courtroom is, by definition, an adversarial environment.

With cases such as Charlie's, isn't it time we found a more humane way to debate the complex ethical questions involved?


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## Happy Paws2 (Sep 13, 2008)

Zaros said:


> If there's the smallest possibility of a chance to life, who are we to deny a child that right?


Surely that depends on what sort of quality of life the child is going to have.


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## Zaros (Nov 24, 2009)

Happy Paws said:


> Surely that depends on what sort of quality of life the child is going to have.


Who can honestly say what his quality of life might be?

I understand Charlie's therapy is not a cure but a treatment.

Just as I understood Lorenzo Odone's therapy was a treatment and not a cure. Lorenzo died 22 years after the doctors predicted he would.

Life is about possibilities.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> Surely we discuss all sorts of things we don't have first hand knowledge or experience of it is after all a chat forum.


We do but in cases like this those discussions are best left to expressing sympathy and understanding for the difficulties of all involved, not picking sides or making comments about a particular course of action when we don't have the first clue what we are talking about. We can discuss aeroplanes in a general sense for example but cannot begin to discuss say the 1549 river Hudson flight incident in terms of what the Captain chose to do because we were not there and don't have any knowledge of what or what is not possible in that situation.


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## havoc (Dec 8, 2008)

cbcdesign said:


> Yes you did none the less you are criticising the medical team on a public forum and I don't think any of us should be doing that, feeling or otherwise unless we have first hand knowledge of what has transpired otherwise we are guilty of adding to the public media circus this has become.


It has become a media circus because the parents wish it. They've done this because they presumably believe publicity is their greatest weapon - and I don't think they're wrong. When it first hit the headlines it was for crowd funding, without that it was an academic issue anyway. We then got the point where they lost a court case and an appeal. Those parents and that baby would be recognised anywhere but an earlier post suggests the *first* reason that child can't be taken home is because the family might abscond. Really? You make yourself that public with the intention of absconding? After the court cases it was reported that the way was clear to turn off life support so presumably this had been discussed in court. If that report was wrong, if that was never under consideration what exactly is the plan with this child? If the intention is to continue to keep him alive then I completely understand the need to keep him in hospital but as I understand it that was not the plan.


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## cbcdesign (Jul 3, 2014)

I don't disagree Havoc. They certainly have courted the media and yep, certainly for the reason you state.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> We do but in cases like this those discussions are best left to expressing sympathy and understanding for the difficulties of all involved, not picking sides or making comments about a particular course of action when we don't have the first clue what we are talking about. We can discuss aeroplanes in a general sense for example but cannot begin to discuss say the 1549 river Hudson flight incident in terms of what the Captain chose to do because we were not there and don't have any knowledge of what or what is not possible in that situation.


I disagree we discuss all manner of things reported in the media or reported by other members of the forum that we have never experienced ourselves and offer our opinions about such subjects. this case has been widely reported on and discussed so I can't see a problem with us discussing it and offering our views about it. They are just that - views and opinions. Some of us do have experience of how the medical profession work behind closed doors (and therefore perhaps don't have blind faith in their decision making) so may not be speaking from total ignorance and of course how do you know some members haven't experienced something similar themselves?


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> I disagree we discuss all manner of things reported in the media or reported by other members of the forum that we have never experienced ourselves and offer our opinions about such subjects. this case has been widely reported on and discussed so I can't see a problem with us discussing it and offering our views about it. They are just that - views and opinions. Some of us do have experience of how the medical profession work behind closed doors (and therefore perhaps don't have blind faith in their decision making) so may not be speaking from total ignorance and of course how do you know some members haven't experienced something similar themselves?


To form opinions we have to be in possession of the fasts otherwise we are just speculating and that can be ok when discussing something innocuous I guess, but this case is a long way from that.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> To form opinions we have to be in possession of the fasts otherwise we are just speculating and that can be ok when discussing something innocuous I guess, but this case is a long way from that.


So you want to censor what we can discuss? Come on are you seriously trying to tell me you never offer opinions on a thread without being in possession of all the facts?


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## Calvine (Aug 20, 2012)

Zaros said:


> If there's the smallest possibility of a chance to life,


Yes; and what I find truly awful and heart-breaking _for the baby's parents_ is the fact that they made a supreme effort to get the money together to pay for the costs of his treatment in the US (a massive amount donated by well-wishers) as they saw a flicker of hope for their son's condition. What a heart-breaking case for all concerned. I believe also that they have been offered the chance of receiving his treatment there for free.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> So you want to censor what we can discuss? Come on are you seriously trying to tell me you never offer opinions on a thread without being in possession of all the facts?


Not at all, say you what you like on a public forum by all means but in the same way you think you are entitled to say whatever you like even if taking sides is a part of that I have the right to say I think its inappropriate when we don't have the facts by which to make an informed judgement.

I offer opinions on something innocuous but I don't take sides or offer opinions in highly emotive cases like this, not on a public forum.


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## JANICE199 (Feb 1, 2008)

cbcdesign said:


> To form opinions we have to be in possession of the fasts otherwise we are just speculating and that can be ok when discussing something innocuous I guess, but this case is a long way from that.


*2 facts we can debate then.*
*I st these parents want to give their child every chance he might have.*
*2nd The hos[ital are saying turn off life support, and he will die.*
*I know what i would be choosing.*


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## cbcdesign (Jul 3, 2014)

You may not choose the way you think you would if you were in the situation and in full possession of all the medical facts. Until we are faced with a situation we just don't know.

Example: A chap many years ago told his family if he was paralysed from the neck down for whatever reason they must ask the hospital to switch off life support. This chap sadly had a very bad accident which rendered him paralysed and in a coma. The hospital refused to switch off the support even though his family told him that these were his wishes. The hospital maintained that unless he was brain dead he must be given the chance to make the choice for himself.

After many months he regained consciousness and was asked the question. He chose to live! The man chose to keep living because now that he was in the situation he realised his life still had meaning and he wanted to see his kids grow up.


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## Zaros (Nov 24, 2009)

Calvine64914709 said:


> Yes; and what I find truly awful and heart-breaking _for the baby's parents_ is the fact that they made a supreme effort to get the money together to pay for the costs of his treatment in the US (a massive amount donated by well-wishers) as they saw a flicker of hope for their son's condition. What a heart-breaking case for all concerned. I believe also that they have been offered the chance of receiving his treatment there for free.


Desperately heartbreaking.

What I find despairingly painful about the entire terrible plight, is that the European Court of Human rights ruled in favour of the hospital as though Charlie didn't have any human rights at all.

.


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## cbcdesign (Jul 3, 2014)

Zaros said:


> Desperately heartbreaking.
> 
> What I find despairingly painful about the entire terrible plight, is that the European Court of Human rights ruled in favour of the hospital as though Charlie didn't have any human rights at all.
> 
> .


I think they did rule for Charlie's human rights, his right to be allowed to die with dignity versus being used for experimental treatment that has no realistic hope of working, according to medical experts.


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## Zaros (Nov 24, 2009)

cbcdesign said:


> I think they did rule for Charlie's human rights, his right to be allowed to die with dignity versus being used for experimental treatment that has no realistic hope of working, according to medical experts.


But, ultimately, isn't that the right of the parent and not some semi detached authority?

And aren't we all, to some extent, Guinea pigs for medical science?


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> I think they did rule for Charlie's human rights, his right to be allowed to die with dignity versus being used for experimental treatment that has no realistic hope of working, according to medical experts.


So in the example you gave earlier the man who had wanted to die should he ever end up with spinal injuries changed his mind when faced with the situation because he chose to keep living despite thinking that he wouldn't choose that when looking at it from a hypothetical situation. He chose life. All those parents are doing is trying every last hope before giving up on life. None of us know what Charlie would choose if he could, we can only suppose. Medical experts are not always right.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> So in the example you gave earlier the man who had wanted to die should he ever end up with spinal injuries changed his mind when faced with the situation because he chose to keep living despite thinking that he wouldn't choose that when looking at it from a hypothetical situation. He chose life. All those parents are doing is trying every last hope before giving up on life. None of us know what Charlie would choose if he could, we can only suppose. Medical experts are not always right.


No but this isn't the 1970's and we have technology now that can afford us a very detailed examination of how badly damaged somebody's brain is. Also 3 Courts have ruled against the treatment. Do you think they have not consulted other medical experts before arriving at their decision?


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## Vanessa131 (Nov 16, 2014)

Zaros said:


> But, ultimately, isn't that the right of the parent and not some semi detached authority?
> 
> And aren't we all, to some extent, Guinea pigs for medical science?


No, it isn't the right of the parent, it's about what is right for the individual child. Charlie has a right not to be in pain, sadly, his parents don't agree.

I wonder if they have been misled, mother has said if successful the treatment will make Charlie a normal healthy boy, when in reality, this couldn't be further from the truth.


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## cbcdesign (Jul 3, 2014)

Zaros said:


> But, ultimately, isn't that the right of the parent and not some semi detached authority?


No it isn't. A child is not the property of their parents. A child is in the care of their parents for as long as they are able to do so properly. Once the Hospital, their expertise and equipment became necessary to keep Charlie alive the parents were unable to discharge their duty in that regard and lost sole responsibility for his welfare.


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## Zaros (Nov 24, 2009)

.


Vanessa131 said:


> No, it isn't the right of the parent, it's about what is right for the individual child. Charlie has a right not to be in pain, sadly, his parents don't agree.
> 
> I wonder if they have been misled, mother has said if successful the treatment will make Charlie a normal healthy boy, when in reality, this couldn't be further from the truth.


Again, I repeat that I fully understand that Charlie's therapy is a treatment, not a cure.

The doctors claim that they're not sure Charlie is in pain.

And I'm a parent, and as biased as it might seem, I'm speaking from a place where it hurts me the most.
And where it hurts me the most, there isn't a day that goes by I don't bleed a little, because the place that hurts most never heals.

Tragic tales such as Charlie only serve to remind me that the medical profession must thoroughly exhaust every last feasible possibility before finally accepting defeat by allowing him go rightfully and peacefully.


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## suewhite (Oct 31, 2009)

Charlie's parents are doing what parents do fighting for there child, I personally think that even if Charlie has the treatment it is a fight they will lose, as an outsider looking in I have my own opinion, but if I was the parent I would be fighting tooth and nail and clinging to any hope I was offered.


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## cbcdesign (Jul 3, 2014)

suewhite said:


> Charlie's parents are doing what parents do fighting for there child, I personally think that even if Charlie has the treatment it is a fight they will lose, as an outsider looking in I have my own opinion, but if I was the parent I would be fighting tooth and nail and clinging to any hope I was offered.


I don't blame you. Perhaps the lesson here is for drug manufacturers and research doctors to think very carefully before giving emotionally compromised parents false hope.


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## Zaros (Nov 24, 2009)

cbcdesign said:


> No it isn't. A child is not the property of their parents. A child is in the care of their parents for as long as they are able to do so properly. Once the Hospital, their expertise and equipment became necessary to keep Charlie alive the parents were unable to discharge their duty in that regard and lost sole responsibility for his welfare.


A child is not the property of strangers who are held in higher places either.

Yet, sadly and tragically, Charlie has become the property of so many.

Except his parents.


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## cbcdesign (Jul 3, 2014)

Zaros said:


> A child is not the property of strangers who are held in higher places either.
> 
> Yet, sadly and tragically, Charlie has become the property of so many.
> 
> Except his parents.


He has lots of people trying to do what they think is in his best interests certainly. What those best interests are is what differs in the minds of people involved in the case.


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## havoc (Dec 8, 2008)

cbcdesign said:


> No but this isn't the 1970's and we have technology now that can afford us a very detailed examination of how badly damaged somebody's brain is. Also 3 Courts have ruled against the treatment. Do you think they have not consulted other medical experts before arriving at their decision?


This isn't the 1970s but forty years from now people will look back and be saying how much more knowledge there is than in 2017. We know more today than we did yesterday but tomorrow may prove us wrong.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> No but this isn't the 1970's and we have technology now that can afford us a very detailed examination of how badly damaged somebody's brain is. Also 3 Courts have ruled against the treatment. Do you think they have not consulted other medical experts before arriving at their decision?


I'm sure they have but that doesn't mean those experts are right and others are wrong. I've looked after many patients over the years with badly damaged brains, that doesn't mean we walk away and leave them to die as they would without feeding/treatment when they are sick.


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## LinznMilly (Jun 24, 2011)

Just in case this hasn't already been posted, here's another parent, with another very disabled child, saying the exact opposite of Charlie Gard's parents:

http://www.bbc.co.uk/news/av/health-40582032/mother-s-plea-for-daughter-s-right-to-die


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## Jobeth (May 23, 2010)

GOSH has been 'trolled' and called 'murderers' over this despite everything they have done. The people responsible for such vile comments should be ashamed of themselves.

http://www.independent.co.uk/news/u...e-donations-backlash-trump-pope-a7838161.html


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## picaresque (Jun 25, 2009)

Jobeth said:


> GOSH has been 'trolled' and called 'murderers' over this despite everything they have done. The people responsible for such vile comments should be ashamed of themselves.
> 
> http://www.independent.co.uk/news/u...e-donations-backlash-trump-pope-a7838161.html


Imagine how it must be for the staff, not to mention the other young patients at GOSH and their families. The American religious right are calling it a socialised medicine death panel FFS. All of this is incredibly damaging. It's so wrong to use this little boy as a political football (not referring to the discussion here btw).


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## Blaise in Surrey (Jun 10, 2014)

A situation with no right answer, only tragedy...


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> I'm sure they have but that doesn't mean those experts are right and others are wrong. I've looked after many patients over the years with badly damaged brains, that doesn't mean we walk away and leave them to die as they would without feeding/treatment when they are sick.


So what's your definition of life and assuming a patient meets that criteria, quality life?

At what point do we as a species say enough is enough, let a person die with dignity and not fight tooth and nail to preserve bodily functions regardless of state of mind?
I think we push the envelope where people are concerned to the point where what would be intolerable for any other creature and considered inhumane doesn't seem to apply for human beings. I believe religion is often the catalyst for that sort of thinking too.


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## Goblin (Jun 21, 2011)

rottiepointerhouse said:


> I'm sure they have but that doesn't mean those experts are right and others are wrong. I've looked after many patients over the years with badly damaged brains, that doesn't mean we walk away and leave them to die as they would without feeding/treatment when they are sick.


A reason we personally have living wills and a reason for things like http://www.bbc.com/news/uk-england-norfolk-14802369. There's a question of just because you can, does not mean you should.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> So what's your definition of life and assuming a patient meets that criteria, quality life?
> 
> At what point do we as a species say enough is enough, let a person die with dignity and not fight tooth and nail to preserve bodily functions regardless of state of mind?
> I think we push the envelope where people are concerned to the point where what would be intolerable for any other creature and considered inhumane doesn't seem to apply for human beings. I believe religion is often the catalyst for that sort of thinking too.


Where there is a pulse and breathing there is life. That is not of course the same thing as having "a life" or "quality of life" but if we go down the road you seem to be suggesting we enter the realms of the Liverpool Pathway and euthanasia not by choice and start allowing doctors/medical staff to play God and decide when to withhold treatment or food or even fluids. You do realise doctors make mistakes and quite a lot of them don't you?



Goblin said:


> A reason we personally have living wills and a reason for things like http://www.bbc.com/news/uk-england-norfolk-14802369. There's a question of just because you can, does not mean you should.


I fully support people having living wills and adults being able to make their own decisions about what they want to happen to them at the end of their life but this is a baby and so I also fully support the right of his parents to at least have a say in what should happen to him. Just because we (society) can say no doesn't mean we should or that we are right and they are wrong.


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## Goblin (Jun 21, 2011)

rottiepointerhouse said:


> but this is a baby and so I also fully support the right of his parents to at least have a say in what should happen to him. Just because we (society) can say no doesn't mean we should or that we are right and they are wrong.


I do get where you are coming from however we'll have to agree to disagree, life is more than a simple mechanical function.


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## rottiepointerhouse (Feb 9, 2014)

Goblin said:


> I do get where you are coming from however we'll have to agree to disagree, life is more than a simple mechanical function.


Oh yes I do agree with that too but I can totally understand where the parents are coming from - they believe there is a chance for Charlie to have a life, even though it will not be a conventional one and even though it will be a shorter one and so they are fighting for the right for him to have that life. Visit any childrens hospice and you will find many many children with severe life limiting illnesses who do have a quality of life. Who can blame them for wanting that for their son too. Its just tragic.


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## catz4m8z (Aug 27, 2008)

rottiepointerhouse said:


> Where there is a pulse and breathing there is life. That is not of course the same thing as having "a life" or "quality of life" but if we go down the road you seem to be suggesting we enter the realms of the Liverpool Pathway and euthanasia not by choice and start allowing doctors/medical staff to play God and decide when to withhold treatment or food or even fluids.


Dont we allow Drs to make these choices anyways though?? Most of us arent qualified to decide when someone is beyond hope as we lack the knowledge and respond more emotionally. We should be trusting Drs to tell us when a loved can be saved and if they will have any quality of life.
Just like we dont allow victims of crime to sentence criminals, we leave it to an impartial judiciary system.


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## rottiepointerhouse (Feb 9, 2014)

catz4m8z said:


> Dont we allow Drs to make these choices anyways though?? Most of us arent qualified to decide when someone is beyond hope as we lack the knowledge and respond more emotionally. We should be trusting Drs to tell us when a loved can be saved and if they will have any quality of life.
> Just like we dont allow victims of crime to sentence criminals, we leave it to an impartial judiciary system.


Doctors do make these choices already of course but that doesn't mean they shouldn't be challenged and that they don't make mistakes. Of course it depends on the situation and circumstances but if it were my OH for instance I wouldn't just accept the first doctor or team telling me there was no hope, I would seek a 2nd and 3rd opinion and if experts in another country were offering me different opinions and a chance at treatment I would take it and would not expect doctors to try and prevent me unless of course my OH had already made his wishes known such as a DNR order/living will. Perhaps you have more trust in doctors than I do but I saw enough mistakes and have experienced them with my own family's treatment to always question and less we forget this is a baby. I completely agree with the Pope

"For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored," it said.

His parents also said the hospital had denied their final wish to be able to take their son home to die, and felt "let down" following the lengthy legal battle.


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## picaresque (Jun 25, 2009)

rottiepointerhouse said:


> Where there is a pulse and breathing there is life. That is not of course the same thing as having "a life" or "quality of life" but if we go down the road you seem to be suggesting we enter the realms of the Liverpool Pathway and euthanasia not by choice and start allowing doctors/medical staff to play God and decide when to withhold treatment or food or even fluids.


Surely it's been a case of playing God this whole time, keeping him alive artificially.


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## rottiepointerhouse (Feb 9, 2014)

picaresque said:


> Surely it's been a case of playing God this whole time, keeping him alive artificially.


That gets complicated though doesn't it? Is it playing God to treat any illness? to operate or give medication? I don't think it is but there is a very fine line especially when it comes to withdrawing treatment and therefore beginning a course of action that will lead to the death of another human being especially when that is against the wishes of the parents. I'm not saying its straightforward but I am a little surprised at the lack of sympathy/understanding from some posters towards the parents.


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## 1290423 (Aug 11, 2011)

cbcdesign said:


> I am not a parent and cannot imagine how painful this must be for Charlie's parents. But this has become a media circus sadly with people wading into the debate who have no medical expertise to even comment on the case including president Trump and the Pope. We must be guided by the professionals in cases like this, not start all out war with them because they are telling us things that are unpalatable and painful. I feel very sorry for Mr Gard and his partner but my feeling based upon what I have read is that its just not meant to be where Charlie is concerned and they will probably have to prepare themselves to say goodbye. We just don't have treatments that can reverse brain damage at this point in time sadly even if treatment halted his condition.


Has there been a decision yet?


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## JANICE199 (Feb 1, 2008)

rottiepointerhouse said:


> That gets complicated though doesn't it? Is it playing God to treat any illness? to operate or give medication? I don't think it is but there is a very fine line especially when it comes to withdrawing treatment and therefore beginning a course of action that will lead to the death of another human being especially when that is against the wishes of the parents. I'm not saying its straightforward but I am a little surprised at the lack of sympathy/understanding from some posters towards the parents.


*I rarely say this, but, i wish there was a rep. button on this thread. Your replies have been, imo. so heart warming. xx*


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## rottiepointerhouse (Feb 9, 2014)

DT said:


> Has there been a decision yet?


No - some delay over a disagreement on whether his head has grown or not based on measurements, the judge has ordered an independent person to go and measure


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## 1290423 (Aug 11, 2011)

rottiepointerhouse said:


> No - some delay over a disagreement on whether his head has grown or not based on measurements, the judge has ordered an independent person to go and measure


Thanks rottie


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## JANICE199 (Feb 1, 2008)

*I hope this link works*
*https://aleteia.org/2017/02/19/litt...-brain-can-now-speak-count-and-attend-school/*


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## rottiepointerhouse (Feb 9, 2014)

JANICE199 said:


> *I rarely say this, but, i wish there was a rep. button on this thread. Your replies have been, imo. so heart warming. xx*


Thank you Janice.



JANICE199 said:


> *I hope this link works*
> *https://aleteia.org/2017/02/19/litt...-brain-can-now-speak-count-and-attend-school/*


It works and what an uplifting and inspirational case he is.


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## MilleD (Feb 15, 2016)

JANICE199 said:


> *I hope this link works*
> *https://aleteia.org/2017/02/19/litt...-brain-can-now-speak-count-and-attend-school/*


Good on him. There are miracles out there, just not loads of them.

Unsure how I feel about his parents though. He has an "I'm a 3 year old disabled model' fb page where his parents (or whoever) post as if they are him. I dunno, I find that a little strange.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> Where there is a pulse and breathing there is life. That is not of course the same thing as having "a life" or "quality of life"


This is where we fundamentally disagree. Machines can sustain a pulse and breathing in bodies belonging to people that are brain dead, that is not life.
We have reached a point where technology can keep a body alive past the point when the brain can no longer do so.
What I favour is giving people some dignity where terminal illness robs them of actual life, not sustaining the body above all other considerations because its mechanical function can be maintained which seems to be the position many are taking.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> This is where we fundamentally disagree. Machines can sustain a pulse and breathing in bodies belonging to people that are brain dead, that is not life.
> We have reached a point where technology can keep a body alive past the point when the brain can no longer do so.
> What I favour is giving people some dignity where terminal illness robs them of actual life, not sustaining the body above all other considerations because its mechanical function can be maintained which seems to be the position many are taking.


No it isn't the position I'm taking - you have only quoted a small part of my post. I've said quite clearly that adults should have the right to choose what happens at the end of their life with DNR/living wills etc, even older children should have a say in whether they want to continue with treatment in some situations but this is a baby and his parents are his advocates. Take a look at the video of this little boy who has the same condition as Charlie - he appears to be ventilated by machine and his Dad describes how he can now move his hands/fingers and vocalise, way beyond what the experts told them to expect. So whilst life may be maintained mechanically it is still a life, albeit not one any of us would choose for our children. Who are we to deny the parents of Charlie the opportunity to try this treatment for him? If it doesn't work they will at least know they have done everything possible.

http://www.bbc.co.uk/news/video_and.../the-us-boy-who-outlived-medical-expectations


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## picaresque (Jun 25, 2009)

rottiepointerhouse said:


> That gets complicated though doesn't it? Is it playing God to treat any illness? to operate or give medication? I don't think it is but there is a very fine line especially when it comes to withdrawing treatment and therefore beginning a course of action that will lead to the death of another human being especially when that is against the wishes of the parents. I'm not saying its straightforward but I am a little surprised at the lack of sympathy/understanding from some posters towards the parents.


I'm not seeing any lack of sympathy towards the parents here, can't speak for elsewhere online as as I'm sure you know it can be a cesspit...
I do feel awful for them, Charlie's mother in particular just looks so tired and drawn. I cannot imagine what they must be going through. This is about Charlie though and his suffering. I suppose the whole question is how much is he suffering and is it somehow justified in the hopes that something can be done for him.


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## crystalwitch (Mar 27, 2017)

It seems that for most of the past year, the parents have trusted the medical staff at GOSH to care for Charlie and do what they considered necessary for his wellbeing. For whatever reason, the doctors came to the conclusion that the baby would suffer more by being kept alive than by being allowed to die peacefully. GOSH is, and has been for years, regarded as one of the foremost children's hospitals in the world. They have always commanded respect from the rest of the world and countless children have been brought to them from all over the world and received the necessary treatment. I cannot see any reason why they would suggest switching off the life support machines unless they were completely certain that no more could be done. I feel awful for the parents, but as far as I know, neither have the necessary medical training or expertise to be able to say that GOSH have got it wrong and all the medical people who are jumping in to say they could help are doing so from great distances. I also wonder, if any of them have thought of the possible consequences of taking the baby to the US. The flight is gruelling for a healthy fit adult. For a desperately ill baby, surely that would be putting his little body under unbearable stress. Trump would do better to concentrate on the hundreds of sick children in his own country, many of whom have parents who cannot afford the necessary treatment; same goes for the Italian hospital offering treatment - are they really saying that no Italian children are in need of their care? It seems to me, that this is a contemptible reaction to the UK leaving the EU. As for Trump, he speaks as his belly dictates and will no doubt contradict himself within the next few weeks. The sad fact is, that Charlie is apparently unable to exist without the machines, and as far as I understand it, the treatment that is being offered is not going to cure him but may prolong his life for a while. The only real 'winners' if he were to be taken to the US would be the doctors and researchers, for whom he would be a guinea pig for them to test their treatments on.


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## Zaros (Nov 24, 2009)

Humane. Now there's a curious term.

I often wonder how 'Humane' we actually are.

We euthanise a dog because we claim it is the kinder solution to letting it suffer from a condition that is not reversible. 

Yet we allow our own kind to suffer the agonies of terminal cancer because euthanasia is considered unethical.

Just a thought.


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## rottiepointerhouse (Feb 9, 2014)

picaresque said:


> I'm not seeing any lack of sympathy towards the parents here, can't speak for elsewhere online as as I'm sure you know it can be a cesspit...
> I do feel awful for them, Charlie's mother in particular just looks so tired and drawn. I cannot imagine what they must be going through. This is about Charlie though and his suffering. I suppose the whole question is how much is he suffering and is it somehow justified in the hopes that something can be done for him.


Oh I think there has been a lack of sympathy from some posters/or coldness towards their plight. Yes the whole question of suffering and how much is justified is a tricky moral dilemma but ask yourself if he had cancer would we accept a degree of suffering? when prem babies are ventilated do we accept a degree of suffering? When children have to undergo major heart or brain surgery do we accept a degree of suffering? Why in this case is it justifiable to withhold a treatment that might help him because of possible suffering? The doctors don't seem to be in agreement about whether he is in pain or not and I don't believe those parents would leave him to suffer pain. I just don't really understand why the medics won't stand aside and let the parents try this last thing for their child, it seems callous.


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## cbcdesign (Jul 3, 2014)

I think there is plentry of sympathy for the parents in terms of the loss they face.


rottiepointerhouse said:


> Oh I think there has been a lack of sympathy from some posters/or coldness towards their plight. Yes the whole question of suffering and how much is justified is a tricky moral dilemma but ask yourself if he had cancer would we accept a degree of suffering? when prem babies are ventilated do we accept a degree of suffering? When children have to undergo major heart or brain surgery do we accept a degree of suffering? Why in this case is it justifiable to withhold a treatment that might help him because of possible suffering? The doctors don't seem to be in agreement about whether he is in pain or not and I don't believe those parents would leave him to suffer pain. I just don't really understand why the medics won't stand aside and let the parents try this last thing for their child, it seems callous.


The medical team believe the treatment is pointless because it wont work and is therefore not in Charlie's best interests. That is completely different scenario to necessary suffering as a side effect of treatments with a realistic expectation of working. It could be argued its just as callous to allow prolonged suffering for Charlie simply to appease parents that won't listen to the medical experts who tell them there is no realistic prospect of this so called treatment working. How can his parents know if Charlie is suffering when he cannot move, cannot see, cannot hear and cannot in any way communicate with the outside world?

Points from todays hearing:-

The family's barrister, Grant Armstrong, responded vigorously to a remark by the judge that the proposed treatment has never been tried on mice with Charlie's condition, let alone humans.
"As I understand it, there are only four people in the world with this condition -- you can't do a controlled trial," he said.
Armstrong added that there were currently no genetically engineered mice with the condition available for testing and that it would take six months to breed them.

So there we have it. There has been no testing of this drug in mice with his condition and none in people either. How can the doctors have any idea how this drug will react in Charlie's body when there has been no clinical tests? How do they know it wont hurt Charlie?


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## cheekyscrip (Feb 8, 2010)

Do not take offense if I say that if Charlie has this treatment it may benefit him more or less but even if they cannot save him the results might be important for other children so his life will have that.
His parents will have that.


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## cbcdesign (Jul 3, 2014)

cheekyscrip said:


> Do not take offense if I say that if Charlie has this treatment it may benefit him more or less but even if they cannot save him the results might be important for other children so his life will have that.
> His parents will have that.


So you advocate using Charlie as a guinea pig? That is precisely why the courts have intervened. It is not ethical to use a person in that way.


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## cheekyscrip (Feb 8, 2010)

cbcdesign said:


> So you advocate using Charlie as a guinea pig? That is precisely why the courts have intervened. It is not ethical to use a person in that way.


But if doctors see a chance for improvement?
We honestly do not know that it will not help him.
Will never know if he dies without trying.


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## cbcdesign (Jul 3, 2014)

cheekyscrip said:


> But if doctors see a chance for improvement?
> We honestly do not know that it will not help him.


How can they see any chance for improvement when they have not even done the most basic of tests? This is why we have comprehensive drug testing programs, we don't just try something and hope it will work. That's not ethical.


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## Goblin (Jun 21, 2011)

rottiepointerhouse said:


> when prem babies are ventilated do we accept a degree of suffering? When children have to undergo major heart or brain surgery do we accept a degree of suffering?


As a parent having been in that situation I can state yes WHEN there is a chance for quality of life. You don't keep someone suffering simply to keep them alive as you simply can. I do sympathise with the parents. This isn't about them though but what is best for the child.


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> It seems that for most of the past year, the parents have trusted the medical staff at GOSH to care for Charlie and do what they considered necessary for his wellbeing. For whatever reason, the doctors came to the conclusion that the baby would suffer more by being kept alive than by being allowed to die peacefully. GOSH is, and has been for years, regarded as one of the foremost children's hospitals in the world. They have always commanded respect from the rest of the world and countless children have been brought to them from all over the world and received the necessary treatment. I cannot see any reason why they would suggest switching off the life support machines unless they were completely certain that no more could be done. I feel awful for the parents, but as far as I know, neither have the necessary medical training or expertise to be able to say that GOSH have got it wrong and all the medical people who are jumping in to say they could help are doing so from great distances. I also wonder, if any of them have thought of the possible consequences of taking the baby to the US. The flight is gruelling for a healthy fit adult. For a desperately ill baby, surely that would be putting his little body under unbearable stress. Trump would do better to concentrate on the hundreds of sick children in his own country, many of whom have parents who cannot afford the necessary treatment; same goes for the Italian hospital offering treatment - are they really saying that no Italian children are in need of their care? It seems to me, that this is a contemptible reaction to the UK leaving the EU. As for Trump, he speaks as his belly dictates and will no doubt contradict himself within the next few weeks. The sad fact is, that Charlie is apparently unable to exist without the machines, and as far as I understand it, the treatment that is being offered is not going to cure him but may prolong his life for a while. The only real 'winners' if he were to be taken to the US would be the doctors and researchers, for whom he would be a guinea pig for them to test their treatments on.


Are you seriously suggesting the Vatican and the Pope intervened because they have got the hump over Brexit? So do we withdraw treatment from all people who can't exist without machines? Do we withdraw treatment from all people with life limiting diseases because there is no cure? Of course GOSH has a great reputation and they do wonderful work but they are not the experts on every single rare condition and if there are other experts in the world who have experience with the condition then GOSH should let him go.



cbcdesign said:


> I think there is plentry of sympathy for the parents in terms of the loss they face.
> 
> The medical team believe the treatment is pointless because it wont work and is therefore not in Charlie's best interests. That is completely different scenario to necessary suffering as a side effect of treatments with a realistic expectation of working. It could be argued its just as callous to allow prolonged suffering for Charlie simply to appease parents that won't listen to the medical experts who tell them there is no realistic prospect of this so called treatment working. How can his parents know if Charlie is suffering when he cannot move, cannot see, cannot hear and cannot in any way communicate with the outside world?
> 
> ...


The medical team "think" it won't work. Quite. They "think" but they don't "know". I'm not saying the experts in the US "know" either but they did help the lad in the video I linked you. I don't know as it is a completely different scenario - how do you measure suffering? how do you decide the length of suffering that is acceptable? why would it be acceptable for one child to experience say a year of suffering in the hope of a cure for a type of cancer but not for Charlie to experience a shorter period of suffering just because they is less hope of a cure. Is it the degree of his disability that is clouding people's judgement? Please look at the website of your local children's hospice and look at the conditions many children deal with which does involve "suffering" and tell me they should all be left to die.



Goblin said:


> As a parent having been in that situation I can state yes WHEN there is a chance for quality of life. You don't keep someone suffering simply to keep them alive as you simply can. I do sympathise with the parents. This isn't about them though but what is best for the child.


I don't believe his parents do want to keep him suffering simply to keep him alive, I believe they feel there is still hope of him improving with the treatment abroad and I don't believe a judge sat in a court room has the right to determine his fate.


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## Melbru (Sep 2, 2016)

The lad in the video has a very different strain of mitochondrial disease. The one that Charlie has is much more severe(!) and no child out of the sixteen children in the world diagnosed with it has lived past early infancy. There is no doubt that this poor child is in the terminal stages of his illness, and I'm only sorry that his brief life is being hauled over the coals of the world's stage.


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## havoc (Dec 8, 2008)

cbcdesign said:


> So there we have it. There has been no testing of this drug in mice with his condition and none in people either. How can the doctors have any idea how this drug will react in Charlie's body when there has been no clinical tests? How do they know it wont hurt Charlie?


Hurt him - in what way? He's going to die anyway. The argument against letting him have this treatment appears to be that he 'may' be in pain and it 'might' make it worse. There's no evidence the treatment does any good but as I understand it there's no evidence the treatment will cause him pain. Why is one side allowed mights and maybes while the other is being denied because they can't supply strict proof?


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> The medical team "think" it won't work. Quite. They "think" but they don't "know". I'm not saying the experts in the US "know" either but they did help the lad in the video I linked you. I don't know as it is a completely different scenario - how do you measure suffering? how do you decide the length of suffering that is acceptable? why would it be acceptable for one child to experience say a year of suffering in the hope of a cure for a type of cancer but not for Charlie to experience a shorter period of suffering just because they is less hope of a cure. Is it the degree of his disability that is clouding people's judgement? Please look at the website of your local children's hospice and look at the conditions many children deal with which does involve "suffering" and tell me they should all be left to die.
> .


In the case of children with cancer enduring a year of suffering in the hope of a cure, they are being treated using medications that have undergone extensive testing that has been shown to have a realistic prospect of curing the disease. That it totally different to Charlie's case where the proposed treatment has not been tested even in mice and has no test data of any kind to support the theory it will help him.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> In the case of children with cancer enduring a year of suffering in the hope of a cure, they are being treated using medications that have undergone extensive testing that has been shown to have a realistic prospect of curing the disease. That it totally different to Charlie's case where the proposed treatment has not been tested even in mice and has no test data of any kind to support the theory it will help him.


Why? what makes it totally different? Why is a year of suffering still with no guarantee of a cure acceptable but a short period isn't just because there is no great hope of a cure?


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## Goblin (Jun 21, 2011)

rottiepointerhouse said:


> I don't believe his parents do want to keep him suffering simply to keep him alive, I believe they feel there is still hope of him improving with the treatment abroad and I don't believe a judge sat in a court room has the right to determine his fate.


As a parent you are wanting to believe the impossible. I'm going to leave this thread but I don't think anyone isn't sympathising with the parents. There's a difference though between not sympathising and feeling as though they are wrong to push this as far as they have done. Of course we are only making judgements on what we have heard, not the full facts.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> Why? what makes it totally different? Why is a year of suffering still with no guarantee of a cure acceptable but a short period isn't just because there is no great hope of a cure?


No medical procedure is guaranteed, probability factors into the decision to treat or not and that is what makes the two situations totally different.
Medical ethics comes into play in these situations..


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## cbcdesign (Jul 3, 2014)

havoc said:


> Hurt him - in what way? He's going to die anyway. The argument against letting him have this treatment appears to be that he 'may' be in pain and it 'might' make it worse. There's no evidence the treatment does any good but as I understand it there's no evidence the treatment will cause him pain. Why is one side allowed mights and maybes while the other is being denied because they can't supply strict proof?


Again medical ethics is at play. Doctors cant just give an untested drug to a human being, even an adult who says he or she is willing to accept the consequences. Western medical ethics exist for a reason!


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## havoc (Dec 8, 2008)

cbcdesign said:


> Western medical ethics exist for a reason!


Isn't this treatment available in the USA and Italy? Are they not western countries?


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## havoc (Dec 8, 2008)

cbcdesign said:


> Doctors cant just give an untested drug to a human being, even an adult who says he or she is willing to accept the consequences.


In that case with such rare diseases that means there can't ever be research which reaches humans. If you're about to turn off life support you've reached the point where there's nothing to lose so why deny the parents the comfort of trying? I don't believe it will do any good but I don't, so far, see any evidence it will do harm.

It has been the NHS legal team which has painted the parents as delusional. I'm not so sure they are. They've been told what to say and they'll have been instructed not to stray into the over emotional so they've stuck to the line that it may offer some improvement. In reality, as a parent, you need to know you've tried everything in order to let go.


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## Elles (Aug 15, 2011)

I thought the hospital had applied for permission to try the experimental treatment, but while they were waiting for permission he suffered seizures that meant they felt it was no longer appropriate. The parents wanted to try it anyway and raised money to pay for the treatment in America instead. But GOSH doctors and equipment would have to travel with him and they felt that unfortunately it was too late for the little chap. It's dragged on from there, with various experts giving opinions and GOSH having to work through the courts, they can't just take it upon themselves to turn off his life support.

If we permit medicine that has had no trials to be used on this patient, then big pharma can apply to dose our terminally ill patients with anything and use them to experiment on, cutting a few expensive and complicated corners. Maybe that's ok, I dunno. 

I thought they only turned off life support when a patient is brain dead, not to actually kill them. So what are the criteria for turning off life support? Never mind, I don't want to know.

I feel for the parents. Their boy looks asleep. I really don't blame them for wanting to try anything and everything that might bring him back to them, however small the chance. I couldn't do it. If he was mine, he would have passed on a long time ago. I wish them luck and strength for the future, whatever it brings.


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## crystalwitch (Mar 27, 2017)

crystalwitch said: ↑
It seems that for most of the past year, the parents have trusted the medical staff at GOSH to care for Charlie and do what they considered necessary for his wellbeing. For whatever reason, the doctors came to the conclusion that the baby would suffer more by being kept alive than by being allowed to die peacefully. GOSH is, and has been for years, regarded as one of the foremost children's hospitals in the world. They have always commanded respect from the rest of the world and countless children have been brought to them from all over the world and received the necessary treatment. I cannot see any reason why they would suggest switching off the life support machines unless they were completely certain that no more could be done. I feel awful for the parents, but as far as I know, neither have the necessary medical training or expertise to be able to say that GOSH have got it wrong and all the medical people who are jumping in to say they could help are doing so from great distances. I also wonder, if any of them have thought of the possible consequences of taking the baby to the US. The flight is gruelling for a healthy fit adult. For a desperately ill baby, surely that would be putting his little body under unbearable stress. Trump would do better to concentrate on the hundreds of sick children in his own country, many of whom have parents who cannot afford the necessary treatment; same goes for the Italian hospital offering treatment - are they really saying that no Italian children are in need of their care? It seems to me, that this is a contemptible reaction to the UK leaving the EU. As for Trump, he speaks as his belly dictates and will no doubt contradict himself within the next few weeks. The sad fact is, that Charlie is apparently unable to exist without the machines, and as far as I understand it, the treatment that is being offered is not going to cure him but may prolong his life for a while. The only real 'winners' if he were to be taken to the US would be the doctors and researchers, for whom he would be a guinea pig for them to test their treatments on.
Click to expand...

Are you seriously suggesting the Vatican and the Pope intervened because they have got the hump over Brexit? So do we withdraw treatment from all people who can't exist without machines? Do we withdraw treatment from all people with life limiting diseases because there is no cure? Of course GOSH has a great reputation and they do wonderful work but they are not the experts on every single rare condition and if there are other experts in the world who have experience with the condition then GOSH should let him go.

No, not specifically Brexit, but ask yourself why, with thousands of desperately ill children in the world, not to mention the children and babies being bombed and injured on a daily basis, the Pope, politicians and hospitals in Rome and the US are so concerned about this little boy? There has to be another agenda. And as for withdrawing treatment from people who cannot exist without machines, each case should be judged individually. Personally, if I were in that situation, neither dead nor able to live without a machine, and the doctors were sure that I could not recover, I would rather they just switched off and let me go. I hope that if it were one of my family in that position, I would have the necessary courage to do what was best for them, even if it meant saying goodbye. This is, of course my personal choice and other people will feel differently. The doctors and other medical staff at GOSH may not be experts on every rare condition, but they do have access to the research and experience of other doctors and hospitals and in the time that Charlie has been there, I have no doubt that they have searched every possible avenue. As far as I know, there are only three or four people in the world at the moment, with this condition, so I doubt that anyone can claim to be an expert, and I have not seen any evidence of these doctors actually examining Charlie - the doctors and nurses at GOSH have, and know better than anyone what is and is not feasible in his case. I would have thought that a better 'solution' would be for the American doctor who believes he can helpto come to the UK. Far less traumatic for Charlie!


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## crystalwitch (Mar 27, 2017)

Elles said:


> I thought the hospital had applied for permission to try the experimental treatment, but while they were waiting for permission he suffered seizures that meant they felt it was no longer appropriate. The parents wanted to try it anyway and raised money to pay for the treatment in America instead. But GOSH doctors and equipment would have to travel with him and they felt that unfortunately it was too late for the little chap. It's dragged on from there, with various experts giving opinions and GOSH having to work through the courts, they can't just take it upon themselves to turn off his life support.
> 
> *If we permit medicine that has had no trials to be used on this patient, then big pharma can apply to dose our terminally ill patients with anything and use them to experiment on, cutting a few expensive and complicated corners. Maybe that's ok, I dunno.*
> 
> ...


I have thought for quite a long time that new medicines, when they get to the point where they need to be tested on humans, should be tested on paedophiles and rapists - they have, by their behaviour, given up any 'human rights' they might have.


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## havoc (Dec 8, 2008)

Elles said:


> If we permit medicine that has had no trials to be used on this patient, then big pharma can apply to dose our terminally ill patients with anything and use them to experiment on, cutting a few expensive and complicated corners.


That's some leap. Allowing patients to agree to experimental treatment doesn't mean all terminally ill patients can be experimented on at all.


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## havoc (Dec 8, 2008)

crystalwitch said:


> I have thought for quite a long time that new medicines, when they get to the point where they need to be tested on humans, should be tested on paedophiles and rapists - they have, by their behaviour, given up any 'human rights' they might have.


Where do you plan on finding such a convicted criminal with the same disease as this baby?


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## Boxerluver30 (Jun 14, 2017)

This is a terribly sad case and my heart really does go out to the parents of poor little Charlie . However, with my practical head on, I do also think it wrong to put him through this treatment which only has a small chance of success, and even If it does work what sort of quality of life will he have afterwards? I really do understand that the parents want to try whatever they can but I just don't agree with it.

It is also making me angry that this has been turned into a massive media fiasco .

Sorry if any of that sounds callous, I do really feel for the parents and cant begin to imagine what they are going through right now but I am also thinking of Charlie in this too.


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## havoc (Dec 8, 2008)

Boxerluver30 said:


> However, with my practical head on, I do also think it wrong to put him through this treatment which only has a small chance of success,


I think it very probably has zero chance of success. If they hadn't been stopped though would that poor child still be around and the argument still raging?


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## Boxerluver30 (Jun 14, 2017)

havoc said:


> I think it very probably has zero chance of success. If they hadn't been stopped though would that poor child still be around and the argument still raging?


Sadly I think your right in that it wont have success . I really don't like saying that but again I have my practical head on

Sorry if I sound thick but who do you mean by they? the parents or the doctors? Im assuming you mean the doctors in which case no he probably wouldn't still be around as they originally wanted to switch off his life support didn't they?


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> I have thought for quite a long time that new medicines, when they get to the point where they need to be tested on humans, should be tested on paedophiles and rapists - they have, by their behaviour, given up any 'human rights' they might have.


OK, I see just where you are coming from now


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## havoc (Dec 8, 2008)

Boxerluver30 said:


> Sorry if I sound thick but who do you mean by they? the parents or the doctors? Im assuming you mean the doctors in which case no he probably wouldn't still be around as they originally wanted to switch off his life support didn't they?


Either way but I did mean if the parents hadn't been stopped from taking him for treatment. Either way though that poor child probably wouldn't still be around.


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## cbcdesign (Jul 3, 2014)

havoc said:


> In that case with such rare diseases that means there can't ever be research which reaches humans. If you're about to turn off life support you've reached the point where there's nothing to lose so why deny the parents the comfort of trying? I don't believe it will do any good but I don't, so far, see any evidence it will do harm..


No it doesn't, it just means you cant start with Human testing before using test animal subjects first.
And since you think there is very little chance of the treatment succeeding, a point of view I share, I think we are on the same page in terms of the viability of the treatment on offer.


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## cbcdesign (Jul 3, 2014)

havoc said:


> Isn't this treatment available in the USA and Italy? Are they not western countries?


No it isn't, certainly not in the US. It would have to be rushed through FDA approval first according to reports on the news recently. They have a testing system just like we do where drugs have to be approved following testing to identify potential side effects etc.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> No medical procedure is guaranteed, probability factors into the decision to treat or not and that is what makes the two situations totally different.
> Medical ethics comes into play in these situations..


Of course no medical procedure is guaranteed just as no drug is guaranteed and eventually people are used in trials. Medical ethics are there to be challenged otherwise how do we progress? Who wants the fate of their child or loved one to be decided by a bunch of judges?


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## Boxerluver30 (Jun 14, 2017)

havoc said:


> Either way but I did mean if the parents hadn't been stopped from taking him for treatment. Either way though that poor child probably wouldn't still be around.


Ah right thanks for clarifying. I just think its terrible its gone on this long really


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## crystalwitch (Mar 27, 2017)

havoc said:


> Where do you plan on finding such a convicted criminal with the same disease as this baby?


*If we permit medicine that has had no trials to be used on this patient, then big pharma can apply to dose our terminally ill patients with anything and use them to experiment on, cutting a few expensive and complicated corners. Maybe that's ok, I dunno.*

I was replying to the part of the post that I underlined above - at no point did I specify the type of illness.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> Of course no medical procedure is guaranteed just as no drug is guaranteed and eventually people are used in trials. Medical ethics are there to be challenged otherwise how do we progress? Who wants the fate of their child or loved one to be decided by a bunch of judges?


Medical ethics can be challenged but they exist to prevent unethical medical practices which must include using terminally children as test subjects.

I generally find that Vegans are soft hearted, kind people but I also think you sometimes get a bit too focussed on the idea that life itself is sacrosanct and lose sight of the individuals rights because of it.


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> Medical ethics can be challenged but they exist to prevent unethical medical practices which must include using terminally children as test subjects.
> 
> I generally find that Vegans are soft hearted, kind people but I also think you sometimes get a bit too focussed on the idea that life itself is sacrosanct and lose sight of the individuals rights because of it.


:Hilarious:Hilarious Not many people call me soft hearted and kind so thank you for that. I wasn't vegan for the over 20 years I spent nursing though and I still held the same opinions - its my diet that has changed not my views.


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## cbcdesign (Jul 3, 2014)

Your welcome! 

One thing I did find interesting on the news tonight, they said that as far as they could tell Charlie was not aware. If a person is unaware then surely by definition they cannot be in pain, that's how anaesthetics work?


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## havoc (Dec 8, 2008)

rottiepointerhouse said:


> Medical ethics are there to be challenged otherwise how do we progress?


They certainly have to take into account changes and technical advances. More and more the discussions are difficult and the decisions reached will be objectionable to some for all sorts of reasons.


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## havoc (Dec 8, 2008)

cbcdesign said:


> Medical ethics can be challenged but they exist to prevent unethical medical practices which must include using terminally children as test subjects


I understand that view but putting the treatment aside, I'm struggling to see how it's any more ethical to embroil the family in drawn out legal argument, keeping the child alive if you truly believe the child is suffering. Whatever motives anyone chooses to ascribe to either party that's the reality of what's happened.


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## cbcdesign (Jul 3, 2014)

Yeah its a very difficult case indeed. I feel sorry for all involved to be honest. His parent perfectly understandably are doing what they think is best, GOSH are doing what they think is best too and the courts have to try and decide what is best too. The whole situation is terribly sad.


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## Jesthar (May 16, 2011)

picaresque said:


> Imagine how it must be for the staff, not to mention the other young patients at GOSH and their families. *The American religious right are calling it a socialised medicine death panel FFS*. All of this is incredibly damaging. It's so wrong to use this little boy as a political football (not referring to the discussion here btw).


Am I the only one to find this rather ironic, coming from a country where the medical insurance companies would have likely refused to pay for life support in the first place?

Or would that be a _capitalist_ medicine death panel?


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## cbcdesign (Jul 3, 2014)

I find some of the American media reports on this case repugnant quite frankly. In a country where the president wants to water down Obamacare leaving upwards of 22 million people without healthcare in the next decade, I think they have a $^$£%$^ nerve even commenting. Its repulsive using this case as a political baseball bat against the principal of state funded healthcare too.


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## Blaise in Surrey (Jun 10, 2014)

Having worked with a number of people terminally ill with MND, I've been thinking about Stephen Hawking. He is still alive due to being permanently on a ventilator, an option not offered to most patients with MND. (All those with MND remain cognitively 'normal' to the end.) The poor little baby's case is very different, of course, but all these debates show how hard these decisions are....


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## rottiepointerhouse (Feb 9, 2014)

Blaise in Surrey said:


> Having worked with a number of people terminally ill with MND, I've been thinking about Stephen Hawking. He is still alive due to being permanently on a ventilator, an option not offered to most patients with MND. (All those with MND remain cognitively 'normal' to the end.) The poor little baby's case is very different, of course, but all these debates show how hard these decisions are....


Yes my OH and I were discussing him tonight in relation to this case. I also find it odd that doctors and the courts will go to great lengths to prevent someone with terminal MND from taking their own life yet in this case they are the ones proposing to end the life.


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## rottiepointerhouse (Feb 9, 2014)

*Charlie Gard has 10% improvement chance, says US doctor*

http://www.bbc.co.uk/news/uk-england-london-40593286

An American doctor offering to treat terminally ill Charlie Gard has told the High Court there is a 10% chance he could improve the baby's condition.

The doctor has agreed to assess Charlie in the UK if the court adjourns.

The US doctor - who cannot be named for legal reasons - has been giving evidence to the High Court via video link.

The judge said he wanted to hear what the doctor thought had changed since he gave his ruling in April.

The doctor suggested there was now clinical data not available in April and he thought the therapy was "worth trying".

Although he has not yet seen Charlie in person, he told the judge tests on the boy's brain show "disorganisation of brain activity and not major structural brain damage".

Using nucleoside treatment - which is a therapy and not a cure - he estimated there would be a 10% chance of "meaningful success" for Charlie.

He said early tests on mice with TK2, a slightly different condition to Charlie's, had resulted in some improvements.

He acknowledged that while it would be desirable to conduct further testing on rodents, that could take a minimum of six months to two years.

The small number of people with Charlie's rare genetic condition - mitochondrial DNA depletion syndrome - would make robust clinical trials difficult, he added.


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## LinznMilly (Jun 24, 2011)

rottiepointerhouse said:


> *Charlie Gard has 10% improvement chance, says US doctor*
> 
> http://www.bbc.co.uk/news/uk-england-london-40593286
> 
> ...


This isn't new. They've known since Monday at the latest that there's a 10% chance. I posted as much on page 1.


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## Team_Trouble (Apr 11, 2016)

cbcdesign said:


> Medical ethics can be challenged but they exist to prevent unethical medical practices which must include using terminally children as test subjects.
> 
> I generally find that Vegans are soft hearted, kind people but I also think you sometimes get a bit too focussed on the idea that life itself is sacrosanct and lose sight of the individuals rights because of it.


How ridiculous!


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## rottiepointerhouse (Feb 9, 2014)

LinznMilly said:


> This isn't new. They've known since Monday at the latest that there's a 10% chance. I posted as much on page 1.


Yes thank you Linz I read your post on page 1 - I posted the update because I was interested in the US doctor giving evidence by video link and agreeing he would come to assess Charlie in the UK if the court adjourns.


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## LinznMilly (Jun 24, 2011)

rottiepointerhouse said:


> Yes thank you Linz I read your post on page 1 - I posted the update because I was interested in the US doctor giving evidence by video link and agreeing he would come to assess Charlie in the UK if the court adjourns.


Sorry, it's just, as no one liked or commented on it (or, actually, on any of my posts since I announced that I was keeping my opinions to myself), there's no way for me to know if people have read it/them, or if they've been overlooked.

Now, that in itself, is fine, but if the same information is repeated, then it compounds the feeling of being overlooked or ignored.


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## Elles (Aug 15, 2011)

There are a lot of posts in this thread that have no likes. I haven't liked any of them myself. Probably because I usually think 'oh I like that' and make the effort, but there's not a lot to like in this one.


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## cbcdesign (Jul 3, 2014)

KatieandOliver said:


> How ridiculous!


No need for rudeness is there, assuming that is what your comment was intended to be in which case its just ignorance otherwise, how do you mean?

The US doctor coming across to see Charlie in person is a good idea I think. A proper assessment cannot hurt.


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## JANICE199 (Feb 1, 2008)

*Now i might be alone in thinking this, but here goes anyway. ( never been afraid of standing alone ) *
*Reading through this thread, listening to news and what comes up on the net, i have come to this conclusion.*
*Take away all titles of this involved, ie. doctors, parents and judges, and what we have left are different opinions. Now my question is, who is right and who is wrong? My answer, and it is just my opinion is, the ones giving this child a chance. The doctors have nothing to loose, neither does a judge, But the parents have something very precious to loose, THEIR child.*


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## rottiepointerhouse (Feb 9, 2014)

JANICE199 said:


> *Now i might be alone in thinking this, but here goes anyway. ( never been afraid of standing alone ) *
> *Reading through this thread, listening to news and what comes up on the net, i have come to this conclusion.*
> *Take away all titles of this involved, ie. doctors, parents and judges, and what we have left are different opinions. Now my question is, who is right and who is wrong? My answer, and it is just my opinion is, the ones giving this child a chance. The doctors have nothing to loose, neither does a judge, But the parents have something very precious to loose, THEIR child.*


I will be very very disappointed if they don't at the very least allow the doctor from the US the opportunity to see and assess him before making their decision.


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## Honeys mum (Jan 11, 2013)

rottiepointerhouse said:


> I will be very very disappointed if they don't at the very least allow the doctor from the US the opportunity to see and assess him before making their decision.


I do hope that they do RPH. 
I think that Charlie bless him and his parents deserve to be allowed for that to happen.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> I will be very very disappointed if they don't at the very least allow the doctor from the US the opportunity to see and assess him before making their decision.


So would I.


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## suewhite (Oct 31, 2009)

Charlie deserves a chance no matter how small.x


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## rottiepointerhouse (Feb 9, 2014)

The US neurologist Michio Hirano, who offered to treat terminally ill Charlie Gard, is due to meet the infant's medical team in London on Monday.

Mr Justice Francis said he intends to give his ruling on 25 July, after GOSH medics and Dr Hirano have had a chance to meet and discuss Charlie's care.

http://www.bbc.co.uk/news/uk-england-london-40610501

I'm so pleased they are giving him this chance.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> The US neurologist Michio Hirano, who offered to treat terminally ill Charlie Gard, is due to meet the infant's medical team in London on Monday.
> 
> http://www.bbc.co.uk/news/uk-england-london-40610501
> 
> I'm so pleased they are giving him this chance.


Agreed. But how much of all this media frenzy could have been avoided if the neurologist had just come to see, examine and assess Charlie BEFORE announcing that he could help.


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> Agreed. But how much of all this media frenzy could have been avoided if the neurologist had just come to see, examine and assess Charlie BEFORE announcing that he could help.


Do you know for sure that he didn't offer to? Do you know for sure that he would have been allowed to without this "media frenzy"? and finally does it really matter?


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## havoc (Dec 8, 2008)

Honeys mum said:


> I think that Charlie bless him and his parents deserve to be allowed for that to happen.


The really sad thing is that they do - now. I don't for one moment think it will do any good but I don't think it will do harm and the parents need to feel they've fought all they can for the lad. I'd expect nothing less from them. I honestly do think real harm has been caused by the legal battles - and whereas I might not have medical knowledge the legal system is a different matter altogether. I'm still unimpressed with the tack taken on non medical matters, I find it unforgiveable.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> Do you know for sure that he didn't offer to? Do you know for sure that he would have been allowed to without this "media frenzy"? and finally does it really matter?


If he had offered to, at any point, do you not think that the Gard's legal team would not have used that in court? If he had asked or suggested it to the GOSH medical team, they would, almost certainly, as a matter of professional courtesy, agreed. There are paediatric neurologists in this country. "does it really matter"? Well I guess it does to Charlie's parents! If you, or someone you love was very ill, would you be more inclined to listen to the doctors who have been caring for them for months, or someone on the other side of the Atlantic, who has never met you/them but can diagnose and prescribe at long distance?


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## havoc (Dec 8, 2008)

crystalwitch said:


> If you, or someone you love was very ill, would you be more inclined to listen to the doctors who have been caring for them for months, or someone on the other side of the Atlantic, who has never met you/them but can diagnose and prescribe at long distance?


If you are in extremis you'll clutch at anything.


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## crystalwitch (Mar 27, 2017)

havoc said:


> If you are in extremis you'll clutch at anything.


True, but if it comes down to who to trust, I'd go with the people who had been caring for so many months. Actually, if I had been Charlie's mother, as soon as the American doctor showed interest, I would have begged him to come and see my child; even offered to pay for his flight and accommodation if I thought there was a spark of hope.


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## havoc (Dec 8, 2008)

crystalwitch said:


> Actually, if I had been Charlie's mother, as soon as the American doctor showed interest, I would have begged him to come and see my child; even offered to pay for his flight and accommodation if I thought there was a spark of hope


That's great as you can obviously afford it. At the start of it all the parents were raising the money through crowd funding - it was academic until they raised the money.


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## cheekyscrip (Feb 8, 2010)

If it was my baby I would move Heaven and Earth to find help. This is what those parents are doing. There are no high hopes, but if thee is a small chance, would go for it.

Parents of children with very rare conditions are often in that boat, no cures that are tried and tested (which company will invest in something that affects maybe 20 children on the planet?).

In my previous work seen such cases and all treatment was very experimental... especially when doing nothing was obvious death sentence...

Like in Charlie's case if they found a child with similar condition and treatment that helped, then would go for it...in such cases it is impossible to go by the book...
Charlie's parents are not unreasonable.


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## crystalwitch (Mar 27, 2017)

havoc said:


> That's great as you can obviously afford it. At the start of it all the parents were raising the money through crowd funding - it was academic until they raised the money.


Actually, you couldn't be further from the truth - I could not afford it, but a) the fund they set up to get Charlie to US passed the million mark before they were refused permission to take him, and b) if it was to give my baby even the slimmest chance of survival, I would have gone into debt, maxed out credit cards, done whatever I had to.


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## Honeys mum (Jan 11, 2013)

havoc said:


> The really sad thing is that they do - now. I don't for one moment think it will do any good but I don't think it will do harm and the parents need to feel they've fought all they can for the lad. I'd expect nothing less from them. I honestly do think real harm has been caused by the legal battles - and whereas I might not have medical knowledge the legal system is a different matter altogether. I'm still unimpressed with the tack taken on non medical matters, I find it unforgiveable.


I agree havoc,they do deserve it. After all surely every parent would want their child to be given every possible chance.I know I would anything and would do everything possible, no matter how small the chance was.


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## cbcdesign (Jul 3, 2014)

cheekyscrip said:


> If it was my baby I would move Heaven and Earth to find help. This is what those parents are doing. There are no high hopes, but if thee is a small chance, would go for it.


So would I up to a point. But if there was a very high probability that my child would end up living life on a ventilator and couldn't have any sort of meaningful life and by that I mean take any pleasure in anything at all, just exist as such, its not something I would want for him or her. I have a mentally handicapped uncle in my family who has been in a hospital since he was 12 years old. He is in his late 60's now. As bad as he is, confined to a wheel chair and unable to talk more than a few words he does at least take pleasure from some things. Classical music and chocolate being two of his favourite things.


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## havoc (Dec 8, 2008)

Honeys mum said:


> I agree havoc,they do deserve it. After all surely every parent would want their child to be given every possible chance.I know I would anything and would do everything possible, no matter how small the chance was.


Be under no illusion here - I don't believe there's any real hope. I'm only looking at the best possible closure for those parents who I think have been treated shabbily.


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## cheekyscrip (Feb 8, 2010)

cbcdesign said:


> So would I up to a point. But if there was a very high probability that my child would end up living life on a ventilator and couldn't have any sort of meaningful life and by that I mean take any pleasure in anything at all, just exist as such, its not something I would want for him or her. I have a mentally handicapped uncle in my family who has been in a hospital since he was 12 years old. He is in his late 60's now. As bad as he is, confined to a wheel chair and unable to talk more than a few words he does at least take pleasure from some things. Classical music and chocolate being two of his favourite things.


But we do not know really if and how much the treatment can help...if it does not..the other option is still there? I do agree that if there is someone with no brain function really then there is no point.
But even in coma things are less straightforward than previously thought....current research into mapping brain activity shows that much more is going on behind closed doors, so to speak...


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## cbcdesign (Jul 3, 2014)

From what I can gather its going to come down to if Charlie's brain is physically damaged or just impaired due to the condition and therefore something the treatment may help.
But as a medical expert said yesterday on the news, these cases are not black and white and sometimes people just have to make a judgement call. With just 4 cases in the world, so I am led to believe, nobody is really an expert on this particular condition as such either so opinion between medical experts may be divided anyway.


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## cheekyscrip (Feb 8, 2010)

cbcdesign said:


> From what I can gather its going to come down to if Charlie's brain is physically damaged or just impaired due to the condition and therefore something the treatment may help.
> But as a medical expert said yesterday on the news, these cases are not black and white and sometimes people just have to make a judgement call. With just 4 cases in the world, so I am led to believe, nobody is really an expert on this particular condition as such either so opinion between medical experts may be divided anyway.


that is better to err on positive side I believe? Some say it will not help, others that it might...I thought a while...but if no one knows for sure...better go with whiter ? Parents' wish matters to me too. This is their life too.


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## Happy Paws2 (Sep 13, 2008)

At the moment the doctors say it's best to let him go, if he has this treatment and he improves a faction, he'll is still deaf, blind, can't breath on his own, can't eat. Why would anyone want their child to live like this.


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## cbcdesign (Jul 3, 2014)

Happy Paws said:


> At the moment the doctors say it's best to let him go, if he has this treatment and he improves a faction, he'll is still deaf, blind, can't breath on his own, can't eat. Why would anyone want their child to live like this.


No I agree. If this treatment leaves him with all of those impairments its hopeless and not fair to subject a person to an existence like that.


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## Honeys mum (Jan 11, 2013)

Just heard on the BBC news that the American doctor is coming to GOSH next week asess Charlie next week.


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## Honeys mum (Jan 11, 2013)

havoc said:


> Be under no illusion here - I don't believe there's any real hope. I'm only looking at the best possible closure for those parents who I think have been treated shabbily


I do realise that. But at least they can know in their hearts that they have gone down every possible route they could for their child.


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## havoc (Dec 8, 2008)

crystalwitch said:


> If you, or someone you love was very ill, would you be more inclined to listen to the doctors who have been caring for them for months, or someone on the other side of the Atlantic, who has never met you/them but can diagnose and prescribe at long distance?





crystalwitch said:


> if it was to give my baby even the slimmest chance of survival, I would have gone into debt, maxed out credit cards, done whatever I had to.


Which is it then? It's so easy to make a comment, claim you'd know what you would do and yet your posts show exactly the dilemma for parents here. You trust the current medical team, then someone else then has something which may make a difference. Nobody can say what they'd do.


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## crystalwitch (Mar 27, 2017)

havoc said:


> Which is it then? It's so easy to make a comment, claim you'd know what you would do and yet your posts show exactly the dilemma for parents here. You trust the current medical team, then someone else then has something which may make a difference. Nobody can say what they'd do.


In this case, where the whole medical team (who have looked after Charlie for all these months and are familiar with him and his condition) are saying that no more treatment can be given that will make any appreciable difference, I hope I would have the courage to take their advice, however much it hurt me. IF the position were different, and just one medically qualified and experienced doctor who was familiar with my child's case, said that they believed there was a good chance of recovery, I would, as I stated, do whatever it took. In Charlie's case, however, the American doctor is not familiar with the baby, has never even met him but feels qualified to say that he can help. Not one of these people have even suggested that Charlie could make a complete recovery and if you love someone, why would you want to condemn them to a life of dark silence with possibly a great deal of pain? And do not assume, just because I have not chosen to share on this forum, that I know nothing of having to make an impossible decision on behalf of someone I love.; Yes, I can say what I'd do.


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## havoc (Dec 8, 2008)

You can say what you've done in a different situation - not what you would do in this one. It's not the same, every case, every person is unique. I don't think i'd do what these parents have done. I can't know. This exact situation never presented itself to me when my children were babies. I'd probably have given in and given up sooner than they have - doesn't mean they're wrong.


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## cbcdesign (Jul 3, 2014)

havoc said:


> You can say what you've done in a different situation - not what you would do in this one. It's not the same, every case, every person is unique. I don't think i'd do what these parents have done. I can't know.


No that is a very good point. Its much easier to think we know what we would do until a situation arises then things can change. The living will example I posted earlier in the thread highlights this beautifully. That guy was adamant that he would not want to live if paralysed. His doctors ignored his living until he was able to decide for himself, and when he came out of his coma and was asked, he chose to live, much to the surprise but delight of his family.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> Do you know for sure that he didn't offer to? Do you know for sure that he would have been allowed to without this "media frenzy"? and finally does it really matter?


And according to what I just heard on the news, far from the American doctor/neurologist offering to come and examine Charlie, GOSH actually invited him way back in January! The news report didn't say why he didn't come then - or since.


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> And according to what I just heard on the news, far from the American doctor/neurologist offering to come and examine Charlie, GOSH actually invited him way back in January! The news report didn't say why he didn't come then - or since.


I'm sure that makes him a terrible person who's opinion can't be trusted then. Why does it matter as I asked earlier? He was invited by the judge to come, he is coming so why don't we just wait and see what he says and whether that influences the court decision in any way and hope whatever the outcome that it gives his parents some peace to know they tried everything to save their son.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> I'm sure that makes him a terrible person who's opinion can't be trusted then. Why does it matter as I asked earlier? He was invited by the judge to come, he is coming so why don't we just wait and see what he says and whether that influences the court decision in any way and hope whatever the outcome that it gives his parents some peace to know they tried everything to save their son.


It makes him irresponsible. Surely he should have seen the child in person *before* declaring that he could help. And as I said earlier, I guess 'it matters' to Charlie's parents! If, after finally examining Charlie, he also comes to the conclusion that no more can be done, he gets to fly home and forget about it. They don't, but will be left feeling devastated. I don't blame them for trying everything they can, but do feel that they are simply delaying the inevitable. Even if his treatment does improve Charlie's condition slightly, he is still going to be a very sick little boy; the doctor has not claimed to be able to cure him completely. And as I also said in an earlier post, the flight across the Atlantic is gruelling even for someone who is fit and healthy; why subject a sick baby to it?


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## havoc (Dec 8, 2008)

crystalwitch said:


> If, after finally examining Charlie, he also comes to the conclusion that no more can be done, he gets to fly home and forget about it. They don't, but will be left feeling devastated.


They're going to feel devastated no matter what - this child can't be made whole. At least if they know they've tried their best for him they won't also feel guilty for the rest of their lives. As for subjecting the child to a flight - well we're back into whether he is or isn't aware and opinion on that seems to change for convenience.


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> It makes him irresponsible. Surely he should have seen the child in person *before* declaring that he could help. And as I said earlier, I guess 'it matters' to Charlie's parents! If, after finally examining Charlie, he also comes to the conclusion that no more can be done, he gets to fly home and forget about it. They don't, but will be left feeling devastated. I don't blame them for trying everything they can, but do feel that they are simply delaying the inevitable. Even if his treatment does improve Charlie's condition slightly, he is still going to be a very sick little boy; the doctor has not claimed to be able to cure him completely. And as I also said in an earlier post, the flight across the Atlantic is gruelling even for someone who is fit and healthy; why subject a sick baby to it?


You may think it makes him irresponsible, many of us don't. He has experience of treating this condition and has experience of using the treatment suggested. When I asked why it matters I meant why it matters who said what and when. Of course it matters to his parents but what matters to them most is being given the chance to save their son's life if there is any way possible. You say you don't blame them for trying everything yet your tone appears to do just that. Of course he will still be a sick little boy and they know that and they know he can't be cured but as I keep on saying go and visit any children's hospice in the country and you will find children with similar conditions and lists of problems who do have a quality of life and speak to their parents and see if they would be happy for strangers to decide whether their child lives or dies and when and whether they would want their child treated or not.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> You may think it makes him irresponsible, many of us don't. He has experience of treating this condition and has experience of using the treatment suggested. When I asked why it matters I meant why it matters who said what and when. Of course it matters to his parents but what matters to them most is being given the chance to save their son's life if there is any way possible. You say you don't blame them for trying everything yet your tone appears to do just that. Of course he will still be a sick little boy and they know that and they know he can't be cured but as I keep on saying go and visit any children's hospice in the country and you will find children with similar conditions and lists of problems who do have a quality of life and speak to their parents and see if they would be happy for strangers to decide whether their child lives or dies and when and whether they would want their child treated or not.


His experience of treating this condition is very limited, since it is so rare and the doctors all agree that Charlie's case is different to the others. As it stands at the moment, it *is* strangers deciding Charlie's fate; the American doctor, the researchers and medical staff in Italy and the judges in the British and European courts, don't know Charlie or his parents; the GOSH medical teams do. They have watched over him for almost a year, alongside his parents - they are the only ones with the medical knowledge and experience, who are also familiar with Charlie and his parents. I doubt that the decision to turn off life support would have been taken lightly - many of them are also parents and can empathise with this little family. I'm sorry for Charlie's parents because I think that since the legal teams got involved, they have been pushed in every direction; the lawyers will be seeing win or lose, not the emotions involved. Even if any of them are sympathetic, they still haven't had the months of sitting beside Charlie's cot, praying and hoping. Without the machines, and the care that has been given by the GOSH staff, it is extremely unlikely that Charlie would be alive now. I don't blame Charlie's parents - but even if I did, my opinion is just that, and not relevant to their decision making. I just think that they are listening to those who are telling them what they want to hear, rather than the truth. In a year's time, the media will have moved onto something or someone else, and the majority of people will have forgotten this baby. And if you visited those children's hospices and asked the parents who they would trust; the medical teams who are familiar with their child, have been working with them for a long time and have access to other medical knowledge/experts, or a doctor who has never even met them, and with whom they have only communicated online, by phone or letter, etc., the majority would say the one they know and trust. I think the salient point in your last sentence is 'who do have a quality of life'. If Charlie is deaf, blind and brain damaged, I don't see any quality of life.


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> His experience of treating this condition is very limited, since it is so rare and the doctors all agree that Charlie's case is different to the others. As it stands at the moment, it *is* strangers deciding Charlie's fate; the American doctor, the researchers and medical staff in Italy and the judges in the British and European courts, don't know Charlie or his parents; the GOSH medical teams do. They have watched over him for almost a year, alongside his parents - they are the only ones with the medical knowledge and experience, who are also familiar with Charlie and his parents. I doubt that the decision to turn off life support would have been taken lightly - many of them are also parents and can empathise with this little family. I'm sorry for Charlie's parents because I think that since the legal teams got involved, they have been pushed in every direction; the lawyers will be seeing win or lose, not the emotions involved. Even if any of them are sympathetic, they still haven't had the months of sitting beside Charlie's cot, praying and hoping. Without the machines, and the care that has been given by the GOSH staff, it is extremely unlikely that Charlie would be alive now. I don't blame Charlie's parents - but even if I did, my opinion is just that, and not relevant to their decision making. I just think that they are listening to those who are telling them what they want to hear, rather than the truth. In a year's time, the media will have moved onto something or someone else, and the majority of people will have forgotten this baby. And if you visited those children's hospices and asked the parents who they would trust; the medical teams who are familiar with their child, have been working with them for a long time and have access to other medical knowledge/experts, or a doctor who has never even met them, and with whom they have only communicated online, by phone or letter, etc., the majority would say the one they know and trust. I think the salient point in your last sentence is 'who do have a quality of life'. If Charlie is deaf, blind and brain damaged, I don't see any quality of life.


I think the most important word you have used there is trust - for whatever reason the parents lost faith/trust in GOSH and so they are not prepared to accept what they say. Not allowing them to take Charlie home to die or even transfer him to a childrens hospice to die and even trying to get them excluded from the meeting with the American specialist - the judge ruled that Charlie's Mum (but not his Dad) could be present. I also don't agree with your assessment that parents of children using hospices necessarily trust the medical teams who have treated their children for years, many feel let down, their concerns ignored and marginalised by society because their children don't have the same life experiences as others. It is not for us to say whether a child with brain damage who is death and blind has any quality of life and it certainly isn't up to us to play god deciding whether they get to live or die.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> I think the most important word you have used there is trust - for whatever reason the parents lost faith/trust in GOSH and so they are not prepared to accept what they say. Not allowing them to take Charlie home to die or even transfer him to a childrens hospice to die and even trying to get them excluded from the meeting with the American specialist - the judge ruled that Charlie's Mum (but not his Dad) could be present. I also don't agree with your assessment that parents of children using hospices necessarily trust the medical teams who have treated their children for years, many feel let down, their concerns ignored and marginalised by society because their children don't have the same life experiences as others. It is not for us to say whether a child with brain damage who is death and blind has any quality of life and it certainly isn't up to us to play god deciding whether they get to live or die.


That's the point though, isn't it? The minute that Charlie was attached to the machines, which have been keeping him alive since then, the doctors were 'playing God'. If the machine is switched off, the person/people responsible for that decision is/are playing God. If the judge rules that he can be taken to the US, then he is playing God. Yet, if everyone had stood back and done nothing, it is fairly sure that Charlie would have died and then the criticism would have been "Why didn't the doctors do something"? It is purely because the GOSH doctors originally thought that he may respond to treatment that he is alive to be argued over. I don't think that Charlie's parents necessarily lost trust in GOSH, rather that they were desperate to find someone, anyone, who would tell them something different and offer a miracle. I think that part of the reason that they didn't want the parents to be present at the meeting is because a lot of the discussion may have gone over their heads - neither are medically trained, as far as I know. I suspect that they were also concerned about tempers being kept in check, which would explain why the judge said that Charlie's mum, but not dad, is allowed to attend.


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## Team_Trouble (Apr 11, 2016)

cbcdesign said:


> No need for rudeness is there, assuming that is what your comment was intended to be in which case its just ignorance otherwise, how do you mean?
> 
> The US doctor coming across to see Charlie in person is a good idea I think. A proper assessment cannot hurt.


I was not being rude. I thought it ridiculous of you to make sweeping generalisations about people based on their food choices.


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> That's the point though, isn't it? The minute that Charlie was attached to the machines, which have been keeping him alive since then, the doctors were 'playing God'. If the machine is switched off, the person/people responsible for that decision is/are playing God. If the judge rules that he can be taken to the US, then he is playing God. Yet, if everyone had stood back and done nothing, it is fairly sure that Charlie would have died and then the criticism would have been "Why didn't the doctors do something"? It is purely because the GOSH doctors originally thought that he may respond to treatment that he is alive to be argued over. I don't think that Charlie's parents necessarily lost trust in GOSH, rather that they were desperate to find someone, anyone, who would tell them something different and offer a miracle. I think that part of the reason that they didn't want the parents to be present at the meeting is because a lot of the discussion may have gone over their heads - neither are medically trained, as far as I know. I suspect that they were also concerned about tempers being kept in check, which would explain why the judge said that Charlie's mum, but not dad, is allowed to attend.


Have you watched any of the video's made by Charlie's parents? have a look at this one about the 3rd item down on the page

http://www.charliesfight.org/

I think we can safely say they have lost faith and trust in GOSH. I'm afraid in this day and age it smacks of arrogance to suggest the parents are not medically trained and therefore should not be party to the discussions that will decide the fate of their baby.

Comment by the lawyer for the parents

But Mr Armstrong said Miss Yates had become quite an expert in the condition. He said: 'She would say, " I'm the mother, this is my child, I know more or less as much about these matters as the professionals. I may wish to comment. I wish to observe and make sure there are no false factual premises advance".'

Mr Armstrong said just Miss Yates could attend, leaving Mr Gard outside. He said: 'Connie Yates has demonstrated a degree of knowledge and research that commands respect.

'She knows almost as much as anyone in the UK about this particular condition. In meeting after meeting, she has demonstrated a far greater commands of the technical Issues than I have.

The judge said it was his 'strong belief' she should not. But Mr Armstrong persisted that it would be unfair for her to be excluded but the Great Ormond Street doctors - with their 'incredibly entrenched view' of Charlie's fate - allowed in.

Medical ethics expert's view

http://video.dailymail.co.uk/video/...678343458/640x360_MP4_5426814338678343458.mp4


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## Rafa (Jun 18, 2012)

crystalwitch said:


> If, after finally examining Charlie, he also comes to the conclusion that no more can be done, he gets to fly home and forget about it


Do you really believe that these dedicated Professionals who care for such sick, poor children really go home and 'forget about it'?

That's a very casual observation.


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## crystalwitch (Mar 27, 2017)

Sweety said:


> Do you really believe that these dedicated Professionals who care for such sick, poor children really go home and 'forget about it'?
> 
> That's a very casual observation.


That remark was in reference to the American neurologist who, as far as I know does not 'care for sick poor children', and in Charlie's case, has never even met him despite being invited to come and see him in person, back in January, by GOSH, who have made their decisions after observing and treating Charlie since well before the American doctor even knew he existed. The truly dedicated professionals at GOSH, have, for months, been trying everything they can to help Charlie and his parents day in, day out.


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## havoc (Dec 8, 2008)

crystalwitch said:


> The truly dedicated professionals at GOSH, have, for months, been trying everything they can to help Charlie and his parents day in, day out


So what. I really don't want to belittle their efforts in any way but they've been doing their job, they have opinions and I'm sure they are emotionally invested to an extent. They too get to walk away from the situation and go home to their own families.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> Have you watched any of the video's made by Charlie's parents? have a look at this one about the 3rd item down on the page
> 
> http://www.charliesfight.org/
> 
> ...


That Connie Yates has researched and has knowledge and understanding of this condition, will be largely what she has learned from the GOSH teams as they will have explained a lot of what they were doing and why, but still cannot make her more of an expert than the consultants and researchers and all the other medical staff who have been caring for Charlie and who have trained for years in their respective fields. I can't watch the video, as my computer won't play it, but for every medical ethics expert who expresses one point of view, there will be another who says the exact opposite. There have been several trotted out on tv who basically support whichever side has brought them out..


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## crystalwitch (Mar 27, 2017)

havoc said:


> So what. I really don't want to belittle their efforts in any way but they've been doing their job, they have opinions and I'm sure they are emotionally invested to an extent. They too get to walk away from the situation and go home to their own families.


And then back again the next day to look after a little boy who a lot of them probably see more of than their own children. And a good deal more difficult to forget a child with whom you have been working closely every day for months, than one who lives on a different continent and who you have never seen.


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## Blaise in Surrey (Jun 10, 2014)

Are you really arguing over this? I think that's so inappropriate....


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## Calvine (Aug 20, 2012)

crystalwitch said:


> he is still going to be a very sick little boy


So true: a 10% improvement on what he has/is right now is really not a bright future for him or his parents. Tho' one can see why they (his parents) want to try.


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## rottiepointerhouse (Feb 9, 2014)

crystalwitch said:


> That Connie Yates has researched and has knowledge and understanding of this condition, will be largely what she has learned from the GOSH teams as they will have explained a lot of what they were doing and why, but still cannot make her more of an expert than the consultants and researchers and all the other medical staff who have been caring for Charlie and who have trained for years in their respective fields. I can't watch the video, as my computer won't play it, but for every medical ethics expert who expresses one point of view, there will be another who says the exact opposite. There have been several trotted out on tv who basically support whichever side has brought them out..


You can't have it both ways and say there are no experts in this field then claim that all his mother knows she knows from GOSH - you have no idea and neither do I what research she has done on her own, what scientific papers and who she has spoken to. All "experts" can be subject to scientific bias and become entrenched in their own point of view/stand. Why don't we just wait and see what the American doctor finds and recommends and then whether GOSH and the court will listen.


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## rottiepointerhouse (Feb 9, 2014)

Blaise in Surrey said:


> Are you really arguing over this? I think that's so inappropriate....


We're discussing it yes as its being discussed all around the world because of the moral/ethical dilemmas it raises. I'm sure its being discussed on forums and on social media, as well as amongst families who all hope never to be in this position.


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## crystalwitch (Mar 27, 2017)

rottiepointerhouse said:


> You can't have it both ways and say there are no experts in this field then claim that all his mother knows she knows from GOSH - you have no idea and neither do I what research she has done on her own, what scientific papers and who she has spoken to. All "experts" can be subject to scientific bias and become entrenched in their own point of view/stand. Why don't we just wait and see what the American doctor finds and recommends and then whether GOSH and the court will listen.


How am I having it both ways? The condition is rare enough that although some professionals know more about it than others, no-one has claimed to be an expert. Connie has learned from the findings of others, especially the medical teams at GOSH, who have undoubtedly increased their own knowledge as they have worked with Charlie. She can't know more about the condition in general than they do, but has obviously picked up on things that apply specifically to Charlie. I didn't say that 'all she knew was from GOSH, but that her knowledge is largely from them.


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## cbcdesign (Jul 3, 2014)

I gave up arguing about this when conflicting information started seeping out in the recent media reports. I am sure I kept hearing that Charlie may be in pain and suffering then just a day or two ago they said as far as they can tell he in unaware. You cant be in pain if you are unaware! I agree with Havoc, his condition regarding how much if any pain he is in seems to change to suit the argument. I await the visit by the American Doctor to see what he thinks.


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## Honeys mum (Jan 11, 2013)

rottiepointerhouse said:


> We're discussing it yes as its being discussed all around the world because of the moral/ethical dilemmas it raises. I'm sure its being discussed on forums and on social media, as well as amongst families who all hope never to be in this position.


Totally agree RPH, My DIL was discussing it with me yesterday.


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## Happy Paws2 (Sep 13, 2008)

cbcdesign said:


> I gave up arguing about this when conflicting information started seeping out in the recent media reports. I am sure I kept hearing that Charlie may be in pain and suffering then just a day or two ago they said as far as they can tell he in unaware.* You cant be in pain if you are unaware! *I agree with Havoc, his condition regarding how much if any pain he is in seems to change to suit the argument. I await the visit by the American Doctor to see what he thinks.


I'm not sure about that, just because he is unaware of everything and doesn't show any signs of a reaction to anything around him still doesn't mean he does feel pain.


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## cbcdesign (Jul 3, 2014)

Happy Paws said:


> I'm not sure about that, just because he is unaware of everything and doesn't show any signs of a reaction to anything around him still doesn't mean he does feel pain.


Pain is a physical sensation to nerve impulses so a person cannot be unaware of everything and in pain, i.e feeling pain. If you feel pain you are aware of it by definition!
This is the basis under which anaesthetics work! People that feel pain whilst under anaesthetics are aware and therefore not anaesthetised.


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## JANICE199 (Feb 1, 2008)

http://www.independent.co.uk/news/h...rt-appeal-life-support-turn-off-a7848391.html

*Charlie Gard granted US citizenship by Congress 'to fly to America for treatment'*


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## Goblin (Jun 21, 2011)

JANICE199 said:


> *Charlie Gard granted US citizenship by Congress 'to fly to America for treatment'*


So now a political pawn when the US can't even provide for their own people? Showing utter contempt of the UK political and legal systems.


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## emmaviolet (Oct 24, 2011)

JANICE199 said:


> http://www.independent.co.uk/news/h...rt-appeal-life-support-turn-off-a7848391.html
> 
> *Charlie Gard granted US citizenship by Congress 'to fly to America for treatment'*


The reporting of this in the headlines say he has been given citizenship, however it's only residence they have given him and the family, they have not made US citizens.

On this, I feel for the family, but feel the poor boy should be allowed to die peacefully now, GOSH are not in the business of murdering babies, they are specialists in this disorder too and one of the very top hospitals for children in the world. Parents have to turn off life support every day of the week, sadly, but you have to put the child and their quality of life first.

I would not allow any dog of mine to carry on like this.


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## cbcdesign (Jul 3, 2014)

I trust the US congress will be prepared to accept full responsibility for Charlie from now onwards should the parents choose take him to the states as a new US citizen and try this so called pioneering treatment, including any expenses that arise from that in the future however high they may be? I think we all know the answer to that!


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## stockwellcat. (Jun 5, 2015)

I have been following the Charlie Gard case and really feel sorry for him and his family and the doctors and medical staff at GOSCH.

I know the family of Charlie Gard are only trying to make sure they have done their best for Charlie and exhausted every avenue open. The medical staff and doctors would have done all they can at GOSCH and exhausted every medical avenue available to them in the UK. People have to understand that the condition Charlie has is very rare with no known cure. I don't know what the Doctors opinion is from the USA but I am sure we are all going to find out in the coming days. The treatment that is being discussed hasn't even been tried on mice, so they don't know if it will work on humans which is going to be something the Judge is going to have to consider when ruling for a second time on this case (it is very rare for a judge to have to rule on such a case a second time because the first ruling would have been final in such a case). This is going to be a very hard decision for the judge to make.

Don't get me wrong but looking forward if it is allowed that Charlie is allowed to go for treatment in the USA, is it known if Charlie will be able to withstand the long journey? If it is ruled Charlie's life support should be withdrawn as the treatment won't improve Charlie's condition this should be allowed to happen (the reason why I say this is we don't know how much pain the poor boy is in, he is on life support which means he cannot breath independently a machine has to do this for him) so the parents can get on with the greaving process, I know it will be hard for them to allow this to happen but this is why it has reached the high court again. I do wish them all the best if the Judge seems to think that the treatment available in the USA may help but deep in my heart I think that Charlie will not be able to withstand the upheaval to the USA.

Please remember through the coming days the doctors and nurses and specialists at Great Ormond Street children's hospital have done everything medically possible for Charlie Gard and do not make these decisions easy or make a habit of requesting to end a child's life easily. Medically everything would have been done for Charlie to improve his condition which has from what experts have said has not improved and has deteriorated I am sure I have heard mentioned on TV.

Everything hangs on what this expert Doctor from the USA has to say.


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## rottiepointerhouse (Feb 9, 2014)

Why don't we all wait and see what the court decides next week based on the American and Italian doctors findings - from what I can understand quite a few further tests/scans have been undertaken which will determine the degree of brain damage and help them decide whether treatment has some chance of success or not.


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## Dogloverlou (Dec 8, 2013)

I think it's all getting a tad cruel now. The parents desire to keep their child alive clouding the ethics and welfare of their child IMO. I feel it's a really sad case all round.

I understand it's a heated topic, but honestly there comes a time & place when ending a human life is the kindest option. Why would you just keep repealing the decisions & opinions of those with the expertise and facts


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## rottiepointerhouse (Feb 9, 2014)

Dogloverlou said:


> I think it's all getting a tad cruel now. The parents desire to keep their child alive clouding the ethics and welfare of their child IMO. I feel it's a really sad case all round.
> 
> I understand it's a heated topic, but honestly there comes a time & place when ending a human life is the kindest option. Why would you just keep repealing the decisions & opinions of those with the expertise and facts


I guess you would if it were your child and you either didn't believe those facts (because you have found other experts with other opinions) or no longer trust the people who now have total control over what happens to your child.


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## Dogloverlou (Dec 8, 2013)

rottiepointerhouse said:


> I guess you would if it were your child and you either didn't believe those facts (because you have found other experts with other opinions) or no longer trust the people who now have total control over what happens to your child.


Well I know what I would do and I know what my opinions & thoughts are on the matter so probably best not to expand on that....But I don't see how they can feel mistrustful of GOSH when they have had various other experts come to the same conclusion.
And this new Doctor who has said he will see & treat Charlie in the US, is he not the one who said there was only a small chance of the treatment working too?


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## rottiepointerhouse (Feb 9, 2014)

Dogloverlou said:


> Well I know what I would do and I know what my opinions & thoughts are on the matter so probably best not to expand on that....But I don't see how they can feel mistrustful of GOSH when they have had various other experts come to the same conclusion.
> And this new Doctor who has said he will see & treat Charlie in the US, is he not the one who said there was only a small chance of the treatment working too?


I think some of the mistrust stems from GOSH initially telling them they could take Charlie home to die or to a children's hospice then going back on that and refusing to let them do either. Imagine how it must feel to be told they want to turn off the life support when you don't agree with the evidence they are putting forward (eyes opening and growth of head being just 2 I can think of without looking it up) then being told you cannot take your baby home to die or even to a children's hospice to die and he must stay and die there. For whatever reason they have lost trust in GOSH they have so I can't think of anything worse than watching someone I love die being in the charge/care of people I do not trust. I wouldn't imagine they feel very supported by them right now. I don't have children so I can only compare to my dogs, I feel strongly I know them better than any vet does and I know when something isn't right. In the past that has led to conflict and me going into battle with a specialist whose colleagues in the referral hospital backed him up. No way would I accept their view/opinion partly because I knew my dog wasn't right and partly because I no longer trusted him so I took her elsewhere - I was right and I got a written apology for letting her down and a full refund. I can't imagine how desperate I would have felt if I'd been prevented by a court from doing that. Not the same and I know it isn't before anyone jumps on me for comparing my dog to a baby but I've also seen plenty of situations when I was nursing where medical staff cover for each other when negligence has occurred or stick to the "ideas/dogma" of a particular expert because they don't want to rock the boat. Have also had two serious cases of medical negligence with my parents, one resulted in my Dad dying at 46 and one resulted in my Mum having most of her pancreas "accidentally" removed making her an insulin controlled diabetic. I will always defend the right of parents/patients/families to challenge experts and seek treatment elsewhere.


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## emmaviolet (Oct 24, 2011)

The parents did actually hire their own expert before the whole court thing too, he came and assessed Charlie and agreed with the rest of the GOSH team.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> The parents did actually hire their own expert before the whole court thing too, he came and assessed Charlie and agreed with the rest of the GOSH team.


What does that prove though? If there are two other experts from abroad who don't agree which of course we don't know yet until the court hearing then why do some people have such a problem with letting the parents try a possible new treatment? The parents seem to trust the opinion of these people so if they also come down on the side of GOSH I believe the parents will let him go knowing they have tried everything for their baby.


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## ForestWomble (May 2, 2013)

I haven't been following the news about this situation, nor have I read the whole of this thread, but from what I know, I feel sorry for the parents, sorry for the medical team at the hospital, but most sorry for this baby. 

I can understand not wanting to agree to the life support being turned off, but on the other hand at least this poor boy will finally get to rest in peace and the parents can begin to grieve. 

If it wasn't for the brain damage I'd agree with the parents, try this new treatment, even a small hope of success is better then none at all. 
However he has brain damage, even if it worked, I can't see how he could live a life worth living and how much time would the treatment give him? 

I can't see any outcome being a good one.


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> What does that prove though? If there are two other experts from abroad who don't agree which of course we don't know yet until the court hearing then why do some people have such a problem with letting the parents try a possible new treatment? The parents seem to trust the opinion of these people so if they also come down on the side of GOSH I believe the parents will let him go knowing they have tried everything for their baby.


I was pointing out that if they did not trust all the experts at GOSH, they have actually had independent doctors in too, who also agree.

I don't feel the poor baby should be a guinea pig, I don't agree with animal testing, to me this is worse, as it's experimenting with a baby. This drug has not been tested on mice, he would be a complete guinea pig, it most likely will not work, just prolonging his suffering. The chance that it may extend his life is small, but with that is that there will not be much more quality to it, so he will be further stuck.
His parents and a lot of the supporters seem to believe he will become a normal child again, which seems to be impossible according to the uttermost experts in the field.

I think Charlie's rights trump the parents, when they are doing this, is it really for him and his own life, or is it for themselves? As this will not help him lead a life that I would ever be happy to see a child of mine leading.


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## stuaz (Sep 22, 2012)

I think as a parent, your instincts will be to try and "save" your child. Any glimmer of hope would need to be exhausted, knowing then that if all else fails, you have tried everything you possibly can. 

That being said, it's this sort of instinct that can sometimes cloud the judgement and it falls on someone independent to (and this will sound cold and heartless) review the facts and conditions presented, and separate themsleves from the emotions of the situation to make a decision. This is ultimately putting the patient first as it should be.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> I was pointing out that if they did not trust all the experts at GOSH, they have actually had independent doctors in too, who also agree.
> 
> I don't feel the poor baby should be a guinea pig, I don't agree with animal testing, to me this is worse, as it's experimenting with a baby. This drug has not been tested on mice, he would be a complete guinea pig, it most likely will not work, just prolonging his suffering. The chance that it may extend his life is small, but with that is that there will not be much more quality to it, so he will be further stuck.
> His parents and a lot of the supporters seem to believe he will become a normal child again, which seems to be impossible according to the uttermost experts in the field.
> ...


I don't agree with animal testing either nor experimenting on a baby but I do believe when a rare disease or an incurable disease strikes it is an opportunity for doctors and scientists to learn as much about it and what helps as they can as long as the patient is not suffering. Its a bit like when someone loses a child in an accident and donates their organs so that other children can live - it often helps the parents come to terms with their loss to know they have helped others and I believe helping gain a better understanding and knowledge of the condition Charlie has would help his parents and future parents faced with the same awful situation. I can honestly say I have not read his parents suggest they think he will be cured or a "normal child" whatever that means, only that they hope it will improve the quality of his life for how long he has. How do you know what sort of improvement this treatment might give him when we haven't heard what the doctors from the USA and Italy have said yet? I'm sure no parent wants their baby to suffer from brain damage but I would seriously urge everyone who thinks a brain damaged child doesn't have a life worth living to go and volunteer in a children's hospice and see what can be done, its a different life granted but it can still be a life worth having.


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## Jobeth (May 23, 2010)

The issue is not about the value of a life with brain damage, although his needs are far beyond that being the only medical concern. The ruling was based on the decision that the treatment could cause Charlie 'pain, suffering and distress.' That is why GOSH is standing by their clinical decision.


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## rottiepointerhouse (Feb 9, 2014)

Jobeth said:


> The issue is not about the value of a life with brain damage, although his needs are far beyond that being the only medical concern. The ruling was based on the decision that the treatment could cause Charlie 'pain, suffering and distress.' That is why GOSH is standing by their clinical decision.


I was responding to the people on here who have been saying that he will have no meaningful life. From the articles I've read doctors don't seem to be in agreement as to whether he is suffering pain and distress or not. As I understand it they want to turn the life support off so that he can die with dignity. I think its perfectly reasonable for his parents to want to try a treatment which might offer some chance of improvement. We will never know unless they are given the opportunity to try.


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## Jobeth (May 23, 2010)

I can understand that the parents would want to try anything. I do worry about how they are going to cope with a decision that goes against this.

However, as an outsider I do feel that GOSH has explained the reason why it is no longer appropriate to try this treatment, especially as they were going to until his medical situation deteriorated. The courts would not support that decision unless there was a very good reason. I certainly would not want to be the judge responsible for making the decision next week.

http://www.gosh.nhs.uk/news/latest-press-releases/supreme-court-update-charlie-gard


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> I don't agree with animal testing either nor experimenting on a baby but I do believe when a rare disease or an incurable disease strikes it is an opportunity for doctors and scientists to learn as much about it and what helps as they can as long as the patient is not suffering. Its a bit like when someone loses a child in an accident and donates their organs so that other children can live - it often helps the parents come to terms with their loss to know they have helped others and I believe helping gain a better understanding and knowledge of the condition Charlie has would help his parents and future parents faced with the same awful situation. I can honestly say I have not read his parents suggest they think he will be cured or a "normal child" whatever that means, only that they hope it will improve the quality of his life for how long he has. How do you know what sort of improvement this treatment might give him when we haven't heard what the doctors from the USA and Italy have said yet? I'm sure no parent wants their baby to suffer from brain damage but I would seriously urge everyone who thinks a brain damaged child doesn't have a life worth living to go and volunteer in a children's hospice and see what can be done, its a different life granted but it can still be a life worth having.


I agree with you about a family donating organs, or to medical science, the difference is though, that Charlie is alive, if you donate a dead persons organs they cannot experience pain, to do this to Charlie could cause prolonged pain and/or suffering. 
This IS experimenting with a baby, there's no two ways about it, the treatment hasn't been trailed on mice yet, and they do not even have FDA approval to try it on mice.

The doctor from the USA has already stated in court the amount of improvement he believes it could achieve.

You say the parents do not believe that he will become a normal child, well to me they are saying it a lot, they are the ones circulating the photos of children who were on ventilators and now riding bikes.

I don't believe a brain damaged child has no quality of life, not in the slightest. 
Charlie's problems range much further than just brain damage, hence why the experts believe he has no quality of life.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> I agree with you about a family donating organs, or to medical science, the difference is though, that Charlie is alive, if you donate a dead persons organs they cannot experience pain, to do this to Charlie could cause prolonged pain and/or suffering.
> This IS experimenting with a baby, there's no two ways about it, the treatment hasn't been trailed on mice yet, and they do not even have FDA approval to try it on mice.
> 
> The doctor from the USA has already stated in court the amount of improvement he believes it could achieve.
> ...


I used organ donation as an example, I know its not the same thing but helping others to live or find out more about a rare disease can help parents deal with their grief and feel their child's loss was for a purpose. Of course he has no quality of life at the moment - the whole issue is about whether the treatment can improve his quality of life or not and I think it is very wrong to deny his parents the chance to try this for him.


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> I used organ donation as an example, I know its not the same thing but helping others to live or find out more about a rare disease can help parents deal with their grief and feel their child's loss was for a purpose. Of course he has no quality of life at the moment - the whole issue is about whether the treatment can improve his quality of life or not and I think it is very wrong to deny his parents the chance to try this for him.


But, again, it's not about the parents and their chance, it's about Charlie as an individual and his rights as such.

I don't agree with animal testing as it's cruel to inflict the unknown on an animal. This drug could make him more aware of his suffering, so in turn make him in more pain and aware of his situation, but unable to communicate. It has the possibility of making him worse too.

He's not a lab rat/guinea pig, and deserves more than that and is entitled to more. Thankfully his rights are given priority in the hospital and courts.

As an aside, this weekend the parents battled GOSH and went to the judge against Charlie having a harmless EEG for more than a half hour, the judge ruled with the hospital that they needed longer to get worthwhile results. However I find it very strange they do not want a painless and harmless test performed on their son, but are battling medical experts to turn their son over for treatment that has never been used before, and it is unknown how it will respond to him and his disorder and will see him become a lab rat in essence.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> But, again, it's not about the parents and their chance, it's about Charlie as an individual and his rights as such.
> 
> I don't agree with animal testing as it's cruel to inflict the unknown on an animal. This drug could make him more aware of his suffering, so in turn make him in more pain and aware of his situation, but unable to communicate. It has the possibility of making him worse too.
> 
> ...


I don't think we are going to agree on this emma and I find your lack of empathy with Charlie's parents quite cold. Stop telling a vegan who is totally opposed to animal testing that he isn't a lab rat, I find that distasteful.


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## JANICE199 (Feb 1, 2008)

emmaviolet said:


> But, again, it's not about the parents and their chance, it's about Charlie as an individual and his rights as such.
> 
> I don't agree with animal testing as it's cruel to inflict the unknown on an animal. This drug could make him more aware of his suffering, so in turn make him in more pain and aware of his situation, but unable to communicate. It has the possibility of making him worse too.
> 
> ...


*I wonder, would you have the same opinion if the situation was the other way around? As has been said before, drs and judges have been proven wrong in the past.*


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## emmaviolet (Oct 24, 2011)

JANICE199 said:


> *I wonder, would you have the same opinion if the situation was the other way around? As has been said before, drs and judges have been proven wrong in the past.*


Can you elaborate? Do you mean if parents did not want to treat and the dr's did? Yes, I would agree with the experts on the situation, and there have been many involved. But in this case they do not.

IN the case of trying experimental things untried on mice let alone humans, if the doctors said yes, I would still be against it,it's not fair to treat a baby who cannot agree to put themselves forwards for a medical trial in this way.

If you mean the King's, the doctors they ran from were not wrong, the treatment the had planned for him could have saved his life also, they just believed their choice was better, but as the other treatment wasn't given, it's a moot point as you cannot compare the two.

I know doctors can be wrong, in actual fact, I am evidence of that, but it's just local doctors and GP's, not world renowned experts, and multiple ones at that, all in agreement.


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> I don't think we are going to agree on this emma and I find your lack of empathy with Charlie's parents quite cold. Stop telling a vegan who is totally opposed to animal testing that he isn't a lab rat, I find that distasteful.


I have empathy for the baby, I do not feel the parents have ownership of a child, no parent should, a child is his own person.

I do find it hard to empathise with them sometimes after their stunt outside GOSH, to have a protest outside the hospital where other parents are facing the loss of their children was in very poor taste. My sympathies are with them, but it isn't all about them, the media circus portrays it in that way, but the babies rights are what matter most, not their own in this. He is above them and their wishes.

We clearly have reached an impasse, as our situations mirror in that I am a vegan against animal testing also, yet my opinion is this little baby should not be subjected to, in essence the same thing.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> Can you elaborate? Do you mean if parents did not want to treat and the dr's did? Yes, I would agree with the experts on the situation, and there have been many involved. But in this case they do not.
> 
> IN the case of trying experimental things untried on mice let alone humans, if the doctors said yes, I would still be against it,it's not fair to treat a baby who cannot agree to put themselves forwards for a medical trial in this way.
> 
> ...


But the world "experts" are not all in agreement - if they were we wouldn't be having this conversation.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> I have empathy for the baby, I do not feel the parents have ownership of a child, no parent should, a child is his own person.
> 
> I do find it hard to empathise with them sometimes after their stunt outside GOSH, to have a protest outside the hospital where other parents are facing the loss of their children was in very poor taste. My sympathies are with them, but it isn't all about them, the media circus portrays it in that way, but the babies rights are what matter most, not their own in this. He is above them and their wishes.
> 
> We clearly have reached an impasse, as our situations mirror in that I am a vegan against animal testing also, yet my opinion is this little baby should not be subjected to, in essence the same thing.


Yes we have a lot in common but still very different views. I believe the whole family not just the child and not just the parents should be taken into consideration, especially as the parents have to live with the outcome of this for the rest of their lives and I do think knowing they have tried everything possible will help them comes to terms with his death when it happens. I'm sorry you find it hard to empathise with them, in every interview I've seen with them their love for Charlie shines out. How can it be hard to empathise with parents about to lose their child?


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## Goblin (Jun 21, 2011)

rottiepointerhouse said:


> I find your lack of empathy with Charlie's parents quite cold.


Strange that disagreeing with someone equates to lack of empathy. You can empathise yet disagree.

Let's change this slightly. Let's ask a few simple questions.. what happens when the parents are no longer around? What will be the impact to the parents mentally giving full term care? How much support for them is there going to be? I've known quite a few carers looking after loved ones (thankfully old) who are not simply mentally exhausted but end up resenting the person they are caring for despite loving them as they are unable to get support themselves.


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## rottiepointerhouse (Feb 9, 2014)

Goblin said:


> Strange that disagreeing with someone equates to lack of empathy. You can empathise yet disagree.
> 
> Let's change this slightly. Let's ask a few simple questions.. what happens when the parents are no longer around? What will be the impact to the parents mentally giving full term care? How much support for them is there going to be? I've known quite a few carers looking after loved ones (thankfully old) who are not simply mentally exhausted but end up resenting the person they are caring for despite loving them as they are unable to get support themselves.


Of course you can empathise and disagree but there are quite a lot of posts on here that lack empathy for the parents and @emmaviolet said herself that she finds it hard to empathise with them.

Not sure what you mean by what happens when the parents are no longer around? Charlie's parents know the treatment is going to give him a "normal" life expectancy so I don't think its very likely he is going to out live them if that is what you mean. Of course there will be an impact on them if he gets treatment and is able to go home and I'm sure they are fully aware of that, I hope they live in an area with excellent children's hospice facilities who can help and support them. I would yet again urge people to at least look at the website for their local children's hospice to see what wonderful work they do and the type of help/support they offer. I'm afraid we cannot make decisions to stop treating or withhold treatment based on whether or not family members may end up resenting their loved ones.


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## Happy Paws2 (Sep 13, 2008)

Goblin said:


> Strange that disagreeing with someone equates to lack of empathy. You can empathise yet disagree.
> 
> Let's change this slightly. Let's ask a few simple questions.. what happens when the parents are no longer around? What will be the impact to the parents mentally giving full term care? How much support for them is there going to be? I've known quite a few carers looking after loved ones (thankfully old) who are not simply mentally exhausted but end up resenting the person they are caring for despite loving them as they are unable to get support themselves.


What ever treatment he gets, I doubt he'll ever be able to go home.

I really worry about this little boy, I understand his parents want to do what they can for him, but are they doing it for him or themselves.

We wouldn't let an animal suffer like this, so why a baby, a crazy world we live in.


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## Paw Campus (Jul 8, 2017)

Praying for the little one and his family...


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## Goblin (Jun 21, 2011)

rottiepointerhouse said:


> Of course there will be an impact on them if he gets treatment and is able to go home and I'm sure they are fully aware of that, I hope they live in an area with excellent children's hospice facilities who can help and support them.


With the greatest respect, being a carer sounds a lot easier than it normally is, especially when looking at long term. Are the parents "fully aware" or are they actually being over optimistic and looking for miracles pretending it is likely. Are they really prepared for the minimal case... although only seeing it through the eyes of the media, it doesn't seem as though they are.



> I would yet again urge people to at least look at the website for their local children's hospice to see what wonderful work they do and the type of help/support they offer.


On that I totally agree, people need to find support and, like the great ormond street hospital itself there are great people dedicated to the wellbeing of their patients.Then again these are professionals, professionals whose decisions and expert knowledge should be respected.



> I'm afraid we cannot make decisions to stop treating or withhold treatment based on whether or not family members may end up resenting their loved ones.


However it plays a role in looking at long term quality of life and that is what we are looking at.


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> Yes we have a lot in common but still very different views. I believe the whole family not just the child and not just the parents should be taken into consideration, especially as the parents have to live with the outcome of this for the rest of their lives and I do think knowing they have tried everything possible will help them comes to terms with his death when it happens. I'm sorry you find it hard to empathise with them, in every interview I've seen with them their love for Charlie shines out. How can it be hard to empathise with parents about to lose their child?


See, I don't think the parents ideas should have any impact on this treatment as they really know very little. The doctors know what it will mean to be an experiment, the parents have no idea what impact it could have. They have been consulted, their opinions valued and looked into, they wanted to try this until he took such a turn for the worse. The professionals know what it would mean to put him up for this. The child has to come first, above anything the parents say.

They have undermined the care they Charlie has been given by the people at the very top of their field, spreading some nasty untruths, that have been proven to be untrue, and basically have made GOSH seem as if they are in the business of murdering babies, when the only reason Charlie is still alive is because of the wonderful care they have given.

As they do not want to face the truth, they have called the doctors there liars multiple times.

I do have empathy with their suffering though and my sympathies go to them, only sometimes I struggle to. Having been in the situation of visiting a dying person everyday for months in a hospital and then a hospice, I know the torture of having to walk in there, you don't know what you're going to face that day, will they still be there? Will they be able to speak, or will they hopefully be better than yesterday? Knowing that feeling, I cannot comprehend ANYONE who has ever been there organising such a protest on the hospitals steps, and that's where I struggle with them in truth.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> See, I don't think the parents ideas should have any impact on this treatment as they really know very little. The doctors know what it will mean to be an experiment, the parents have no idea what impact it could have. They have been consulted, their opinions valued and looked into, they wanted to try this until he took such a turn for the worse. The professionals know what it would mean to put him up for this. The child has to come first, above anything the parents say.
> 
> They have undermined the care they Charlie has been given by the people at the very top of their field, spreading some nasty untruths, that have been proven to be untrue, and basically have made GOSH seem as if they are in the business of murdering babies, when the only reason Charlie is still alive is because of the wonderful care they have given.
> 
> ...


I think that is rather arrogant to say the parents know very little - I imagine by now they know more about mitochondria and the disease Charlie suffers from than most people including doctors. I have a friend with a son who has a rare blood disorder, he will no longer take him to our local hospital because the knowledge there is so basic, they don't understand his condition anywhere near as well as the parents do and have at times put his life in danger. Parents/patients can and do acquire a great deal of knowledge and that should not be dismissed. I hate to tell you but lots of treatments/medications/procedures are experimental - my Mum for instance after most of her pancreas was accidentally removed and she became a Insulin dependent diabetic was put on a drug that had not been through trials for use in her condition.

I haven't seen any nasty untruths that have come directly from Charlie's parents, I know some of the campaign team behind them have got a bit carried away and the parents have publicly asked for any abuse of GOSH staff to stop. I have also seen them challenge some of the statements made by his medical team such as about him not opening his eyes and about his head not having grown but again I haven't seen them call the doctors liars.


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## rottiepointerhouse (Feb 9, 2014)

Goblin said:


> With the greatest respect, being a carer sounds a lot easier than it normally is, especially when looking at long term. Are the parents "fully aware" or are they actually being over optimistic and looking for miracles pretending it is likely. Are they really prepared for the minimal case... although only seeing it through the eyes of the media, it doesn't seem as though they are.
> 
> On that I totally agree, people need to find support and, like the great ormond street hospital itself there are great people dedicated to the wellbeing of their patients.Then again these are professionals, professionals whose decisions and expert knowledge should be respected.
> 
> However it plays a role in looking at long term quality of life and that is what we are looking at.


I know - I've been there both in a professional and a personal capacity - I understood Charlie's Mum was a carer too although not sure where I read that. I'm sure his parents are looking for miracles - who wouldn't be?

Have you never felt the need to challenge a professional? I have, many times and as a nurse I witnessed the way many patients/families were treated by consultants when they dared to question or challenge a decision. Hopefully it has improved a bit these days but I vividly remember one man on the bowel surgery ward I worked on being told quite bluntly by the consultant during a ward round that he had cancer and needed surgery to remove it immediately and would have a colostomy, the man in shock asked if there were any alternatives and wanted time to speak to other doctors - his own GP for instance who he had known for decades and trusted and possibly get a second opinion. The consultant was so rude to him and pretty much told him if he didn't accept his opinion to go home and not come back.

I don't agree that a possible strain on family members should influence our decisions about treatment - that is a very slippery slope to go down much like the Liverpool Pathway these things can start out with good intentions and get terribly abused.


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> I think that is rather arrogant to say the parents know very little - I imagine by now they know more about mitochondria and the disease Charlie suffers from than most people including doctors. I have a friend with a son who has a rare blood disorder, he will no longer take him to our local hospital because the knowledge there is so basic, they don't understand his condition anywhere near as well as the parents do and have at times put his life in danger. Parents/patients can and do acquire a great deal of knowledge and that should not be dismissed. I hate to tell you but lots of treatments/medications/procedures are experimental - my Mum for instance after most of her pancreas was accidentally removed and she became a Insulin dependent diabetic was put on a drug that had not been through trials for use in her condition.
> 
> I haven't seen any nasty untruths that have come directly from Charlie's parents, I know some of the campaign team behind them have got a bit carried away and the parents have publicly asked for any abuse of GOSH staff to stop. I have also seen them challenge some of the statements made by his medical team such as about him not opening his eyes and about his head not having grown but again I haven't seen them call the doctors liars.


They may know more than a layman about the disease, or a GP, however they cannot possibly know more about this than the specialists who deal with the disease every single day, GOSH is a specialist hospital for this disorder.
It is also impossible for them to know the science and theory behind every part of the disorder and the study and understanding that takes years to comprehend, such as the fact he could actually be having seizures all the time, however he is unable to show it.

They actually called the doctors liars the last time they were in court.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> They may know more than a layman about the disease, or a GP, however they cannot possibly know more about this than the specialists who deal with the disease every single day, GOSH is a specialist hospital for this disorder.
> It is also impossible for them to know the science and theory behind every part of the disorder and the study and understanding that takes years to comprehend, such as the fact he could actually be having seizures all the time, however he is unable to show it.
> 
> They actually called the doctors liars the last time they were in court.


No but the "experts" from the US and Italy can help them with the very scientific stuff. I think you should credit his mother with the knowledge she has gained and the eloquence with which she participates in discussions about it.

Do you mean this?

http://www.independent.co.uk/news/u...l-treatment-terminally-ill-baby-a7834046.html

The couple interrupted the hearing, with Mr Gard shouting: "When are you going to start telling the truth?" at a barrister representing Great Ormond Street bosses. Doctors at the children's hospital say it is kinder for Charlie's life-support treatment to sto


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> No but the "experts" from the US and Italy can help them with the very scientific stuff. I think you should credit his mother with the knowledge she has gained and the eloquence with which she participates in discussions about it.
> 
> Do you mean this?
> 
> ...


Yes, then Connie accused them of lying.

http://www.mirror.co.uk/news/uk-news/charlie-gards-parents-arrive-high-10769044


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> Yes, then Connie accused them of lying.
> 
> http://www.mirror.co.uk/news/uk-news/charlie-gards-parents-arrive-high-10769044


Can't hear any accusation of lying in that clip but seriously when you work in hospitals you get used to taking it on the chin when grieving and anxious families hit out and blame you, its not personal. I'm not sure what you want/expect them to do if they genuinely do not believe the evidence the hospital are presenting - roll over and just accept it?


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## emmaviolet (Oct 24, 2011)

RPH, and sometimes, you have exhausted all possible avenues, and there's still nothing to be done to save someone, I think the parents have already reached that situation. They already have done every thing possible, this isn't really a credible option, it's not an FDA approved treatment.

It's not the doctors who are killing him, sadly it's his incurable disease that is. There are things a lot worse than death, and sometimes, letting go is the kindest thing you can do.


rottiepointerhouse said:


> Can't hear any accusation of lying in that clip but seriously when you work in hospitals you get used to taking it on the chin when grieving and anxious families hit out and blame you, its not personal. I'm not sure what you want/expect them to do if they genuinely do not believe the evidence the hospital are presenting - roll over and just accept it?


Why would a hospital lie? It's not in their interests to, they save every child they can. It's more likely the parents misunderstand reflex reactions from Charlie.

I would expect them to not start a protest outside the hospital for the reasons I outlined earlier, at the very least.

We'll just agree to disagree. We're on the opposite sides of this. But at the centre is a baby, clearly in a terrible state, and the only hope is that his needs and rights are put first in all of this, which is what the court is trying to do here.


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## rottiepointerhouse (Feb 9, 2014)

emmaviolet said:


> RPH, and sometimes, you have exhausted all possible avenues, and there's still nothing to be done to save someone, I think the parents have already reached that situation. They already have done every thing possible, this isn't really a credible option, it's not an FDA approved treatment.
> 
> It's not the doctors who are killing him, sadly it's his incurable disease that is. There are things a lot worse than death, and sometimes, letting go is the kindest thing you can do.
> 
> ...


I agree that once you have exhausted every possible avenue you have to accept the inevitable and if the US/Italian doctors agree that this treatment cannot help Charlie then I believe they will accept that they have tried everything and I hope the hospital will let them take him somewhere else such as to a children's hospice to die. Whatever the outcome of the court case I will continue to pray for Charlie and his parents and hope people treat them with kindness and empathy.


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## emmaviolet (Oct 24, 2011)

rottiepointerhouse said:


> I agree that once you have exhausted every possible avenue you have to accept the inevitable and if the US/Italian doctors agree that this treatment cannot help Charlie then I believe they will accept that they have tried everything and I hope the hospital will let them take him somewhere else such as to a children's hospice to die. Whatever the outcome of the court case I will continue to pray for Charlie and his parents and hope people treat them with kindness and empathy.


Hopefully if the court decides that it is not enough, then Charlie's passing will be painless and peaceful. No matter what, they already have exhausted every possible 'treatment', as this isn't really a treatment yet, so they can be sure everything has been tried.

Although I don't believe in an ultimate God, I'm keeping the baby in my thoughts too, and hope all involved are treated well and with kindness, after everything, it cannot be easy for those treating him either, and hope the parents are seeing someone currently for help.


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## stockwellcat. (Jun 5, 2015)

My heart goes out to Charlie's parents and Charlie as well.

The court case is being streamed here by a reporter in the court room: 
*Now too late to treat Charlie Gard*
http://news.sky.com/story/live-judge-considers-charlie-gards-future-10959647

The family solicitor has said the international team of experts have confirmed the parents worst fears and it is only a matter of time and it is not in Charlie's best interests to pursue treatment. Parents wish to withdraw request to change original order.


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## Charity (Apr 17, 2013)

To be told that all hope is gone must be absolutely heartbreaking. In the past, I was always of the opinion that parents should have the final say in which happens to their child but, I must admit, this case has made me think again looking at the severity of Charlie's disabilities. God bless him and comfort his parents.


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## rottiepointerhouse (Feb 9, 2014)

So sorry to hear this. Wish I could think of something profound to say but I can't so just wishing peace and acceptance to his family and a peaceful journey for Charlie when the time comes.


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## cbcdesign (Jul 3, 2014)

It was too late months ago according to GOSH hence being at odds with the parents and the ensuing court cases. That's a different picture to the one being painted by Grant Armstrong in his statement “Charlie has waited patiently for treatment. Due to delay, that window of opportunity has been lost.”

A very sad situation all round.


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## Lexiedhb (Jun 9, 2011)

Its over. 
I hope his family can fine peace with time.


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## havoc (Dec 8, 2008)

emmaviolet said:


> See, I don't think the parents ideas should have any impact on this treatment as they really know very little


They're his parents. It's their job to fight their hardest for his life - however misguided you may believe they are. We all kno w they're clutching at straws but how else should parents be?

If they were paying for his medical care, if we didn't have an NHS their right to an opinion, an input wouldn't be questioned so this isn't about how much or how little they know. It's become a very unattractive power game.


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## cbcdesign (Jul 3, 2014)

havoc said:


> They're his parents. It's their job to fight their hardest for his life - however misguided you may believe they are. We all kno w they're clutching at straws but how else should parents be?
> 
> If they were paying for his medical care, if we didn't have an NHS their right to an opinion, an input wouldn't be questioned so this isn't about how much or how little they know. It's become a very unattractive power game.


Ultimate power where children are concerned lies with the state, it always has.


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## kimthecat (Aug 11, 2009)

How sad . Rest in peace , little Charlie.


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## rottiepointerhouse (Feb 9, 2014)

http://www.bbc.co.uk/news/uk-england-40708343

Mr Justice Francis paid tribute to Charlie's parents and said no-one could comprehend their agony and no parents could have done more.

He said they were now prepared to accept Charlie should be moved to palliative care and be allowed to die with dignity.

In a statement, GOSH said "the agony, desolation and bravery" of the parents' decision "command GOSH's utmost respect and humble all who work there".


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## havoc (Dec 8, 2008)

cbcdesign said:


> Ultimate power where children are concerned lies with the state, it always has


Oh it does and the state always wins, right or wrong. It's their way or the highway. In a case like this though there wouldn't be the same determination to demonise the parents if the child had never been under state funded care. If they were super rich we'd know nothing about this.


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## Happy Paws2 (Sep 13, 2008)

So sad, but he'll be a peace soon. Thinking about all involved.


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## Happy Paws2 (Sep 13, 2008)

Just heard on the BBC that the American Doctor has withdrawn the offer of treatment after seeing an MIR scan taken last week.


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## emmaviolet (Oct 24, 2011)

havoc said:


> They're his parents. It's their job to fight their hardest for his life - however misguided you may believe they are. We all kno w they're clutching at straws but how else should parents be?
> 
> If they were paying for his medical care, if we didn't have an NHS their right to an opinion, an input wouldn't be questioned so this isn't about how much or how little they know. It's become a very unattractive power game.


They have always had a right to an opinion, but ultimate decisions shouldn't be made by those who do not know what is ultimately for the best for the child's health. Just being able to produce a child does not make them qualified enough to make very, very complex medical decisions.

It must be a very hard day for the family and the staff who have dedicated so much time to Charlie's care. Hopefully his passing will be peaceful and he can be relieved of any suffering.


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## Catharinem (Dec 17, 2014)

So sorry for the parents and family. To admit there is no longer any hope must be devastating, and their bravery in withdrawing their objection to the original ruling, to withdraw life support, is immense. As their last hope died, so too, in all but the final physical sense, did their beloved son. May they find solace in the judge's words, that they did everything they could, and strength to watch over him for whatever time he has left.


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## Goblin (Jun 21, 2011)

havoc said:


> They're his parents. It's their job to fight their hardest for his life


Unfortuately though, this I have to disagree with. It's not their job to fight for his life but to fight in his best interest. Sometimes love means his best interest isn't clear.

A sad situation as originally stated. Here's to hoping all involved are supported short and long term.


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## havoc (Dec 8, 2008)

Goblin said:


> Unfortuately though, this I have to disagree with. It's not their job to fight for his life but to fight in his b


I don't expect the unconditional love of a parent to be logical. I do think the right result has been reached but that doesn't mean I condemn the parents for fighting for their child.


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## Jobeth (May 23, 2010)

http://news.sky.com/story/great-ormond-street-hits-out-at-us-doctor-over-charlie-gard-10960025

GOSH has released this statement about the doctor involved. Lord Winston has said that it was 'wicked' to give the parents the idea that if he had been treated earlier there would have been a different outcome.

I hope this gives Charlie's parents the answer to the 'what ifs' that they said they had as everyone did all that they could. They clearly love him and now need to be left to grieve in peace.


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## Goblin (Jun 21, 2011)

havoc said:


> I don't expect the unconditional love of a parent to be logical.


Totally agree which is why I do think the parents must to be supported, they are not to blame. This whole issue however was based on what was best for Charlie. Your assertion that the primary focus for the parents should have been on life is something I cannot agree with unfortunately. It is sad that the parents had to and did finally accept this. I would hope that those who have faced a similar situation in the past and will in the future can take some comfort from the idea that sometimes, life isn't the best thing for a child and that love sometimes means letting go, as much as I wish otherwise and we could cure everything. Charlie's parents are not unique in having to make similar heartrending decisions and I would hope each and everytime, support is available.


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## cbcdesign (Jul 3, 2014)

Goblin said:


> Totally agree which is why I do think the parents must to be supported, they are not to blame. This whole issue however was based on what was best for Charlie. Your assertion that the primary focus for the parents should have been on life is something I cannot agree with unfortunately. It is sad that the parents had to and did finally accept this. I would hope that those who have faced a similar situation in the past and will in the future can take some comfort from the idea that sometimes, life isn't the best thing for a child and that love sometimes means letting go, as much as I wish otherwise and we could cure everything. Charlie's parents are not unique in having to make similar heartrending decisions and I would hope each and everytime, support is available.


I have to agree. I think Charlie's parents were so overwrought with love and the pain that losing him was going to cause they seem to have of lost sight of what GOSH were trying to convey. The situation was not helped by the Americans Doctors intervention followed by Trump and the Pope sticking their noses into the case.


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## MollySmith (May 7, 2012)

I can't imagine. I don't know how the media reporting is on this and if it's fully representative of their feelings (the Telegraph are leaving with 'We had a chance but we were not allowed' which worries me). I hope that they can find some meaning in the strength they have shown and their love because living a life where coming to terms with what has happened isn't possible, is a heartbreaking place to be and too painful for words. What I do know is that despite loss myself, I still could not imagine how hard this has been for them. I've heard the words that all is lost and it never ever leaves you.


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## cbcdesign (Jul 3, 2014)

MollySmith said:


> I can't imagine. I don't know how the media reporting is on this and if it's fully representative of their feelings (the Telegraph are leaving with 'We had a chance but we were not allowed' which worries me).


Yes I don't like the underlying tone of it either. It suggests that the blame game has started when in fact Charlie's condition deteriorated substantially back in January.


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## MollySmith (May 7, 2012)

cbcdesign said:


> Yes I don't like the underlying tone of it either. It suggests that the blame game has started when in fact Charlie's condition deteriorated substantially back in January.


It's incredibly sad, acceptance takes years and I would assume they are incredibly upset and angry, naturally so I am sure. Such complex and heartbreaking emotions to deal with, my thoughts on reading that were not 'blame game' but troubling for their welfare, this is a lot to deal with and so publicly.


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## havoc (Dec 8, 2008)

Goblin said:


> Your assertion that the primary focus for the parents should have been on life is something I cannot agree with unfortunately


It wouldn't be if I believed a parent should be working from cold hearted logic. As has been pointed out in this thread and through the courts, that's the job of others. I don't know, can't imagine, at what point any parent should give up on their child.


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## emmaviolet (Oct 24, 2011)

havoc said:


> It wouldn't be if I believed a parent should be working from cold hearted logic. As has been pointed out in this thread and through the courts, that's the job of others. I don't know, can't imagine, at what point any parent should give up on their child.


Turning off life support isn't giving up on a child though. 
Sadly parents are having to do the same thing every day of the week, it doesn't mean they gave up on their child, or that they don't love them as much as Charlie's parents.


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## Goblin (Jun 21, 2011)

havoc said:


> It wouldn't be if I believed a parent should be working from cold hearted logic. As has been pointed out in this thread and through the courts, that's the job of others. I don't know, can't imagine, at what point any parent should give up on their child.


Unfortunately many do have to. It's important that each case is taken on it's own merit. My point is that it is not giving up on their child. Many have and continue to make heartrending decisions of this nature out of the press spotlight. They do not love their children any less by letting go. Not what you are stating but what you could be seen as implying.


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## havoc (Dec 8, 2008)

emmaviolet said:


> Turning off life support isn't giving up on a child though


Maybe not with a logical medical or legal head on. It is to a parent. This type of case is far from unique, it just happens to have hit the media.


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## emmaviolet (Oct 24, 2011)

havoc said:


> Maybe not with a logical medical or legal head on. It is to a parent. This type of case is far from unique, it just happens to have hit the media.


No, I'm sorry, it's not, and it's unfair to label anyone who has had to face the decision as to what is best for their child as giving up. 
You can call it letting go, but never giving up on them.


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## havoc (Dec 8, 2008)

Goblin said:


> They do not love their children any less by letting go. Not what you are stating but what you could be seen as implying


In the past few years I've personally known two families where children have died. In both I'm pretty sure if someone had suggested dunking them in a pool full of crocodiles might help they'd have wanted to try it. There is eventually a certain acceptance of the inevitable but there is never an abandon of hope until the very end.


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## rottiepointerhouse (Feb 9, 2014)

Jobeth said:


> http://news.sky.com/story/great-ormond-street-hits-out-at-us-doctor-over-charlie-gard-10960025
> 
> GOSH has released this statement about the doctor involved. Lord Winston has said that it was 'wicked' to give the parents the idea that if he had been treated earlier there would have been a different outcome.
> 
> I hope this gives Charlie's parents the answer to the 'what ifs' that they said they had as everyone did all that they could. They clearly love him and now need to be left to grieve in peace.


Also from your link

The hospital said in a statement that it would be giving "careful thought" to what it can learn from the "bruising" court fight, after *Charlie's parents withdrew their application to take him to the US* for treatment.

I hope perhaps some good can come from this and the hospital might look at communication/procedures/family liaison & support because for whatever reason and none of us know what that reason is the family did lose faith/trust and the situation escalated, it would be good if that could be reflected on in the coming months to try and avoid this sort of situation in the future.



MollySmith said:


> I can't imagine. I don't know how the media reporting is on this and if it's fully representative of their feelings (the Telegraph are leaving with 'We had a chance but we were not allowed' which worries me). I hope that they can find some meaning in the strength they have shown and their love because living a life where coming to terms with what has happened isn't possible, is a heartbreaking place to be and too painful for words. What I do know is that despite loss myself, I still could not imagine how hard this has been for them. I've heard the words that all is lost and it never ever leaves you.


I read that they might set up a charity or foundation in his memory to use the money donated for his treatment so hopefully in the future that may give them some focus and help them come to terms with their loss.



cbcdesign said:


> Yes I don't like the underlying tone of it either. It suggests that the blame game has started when in fact Charlie's condition deteriorated substantially back in January.


When faced with what they now have to go through it is entirely natural to hit out and look for someone to blame, I have had many upset/grieving relatives hit out (one or two physically but mainly verbally/emotionally) - I'm afraid understanding that comes with the territory as does not judging but offering support despite it.


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## MilleD (Feb 15, 2016)

emmaviolet said:


> Turning off life support isn't giving up on a child though.
> Sadly parents are having to do the same thing every day of the week, it doesn't mean they gave up on their child, or that they don't love them as much as Charlie's parents.


Very true, and I do worry what affect it might have on such parents in the future if they are made to feel they haven't put up as much of a fight.


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## cbcdesign (Jul 3, 2014)

havoc said:


> In the past few years I've personally known two families where children have died. In both I'm pretty sure if someone had suggested dunking them in a pool full of crocodiles might help they'd have wanted to try it. .


I think that just demonstrates how emotionally compromised parents can be and how important the intervention of medical experts and courts is in these situations.


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## Guest (Jul 26, 2017)

Sadly, this tragic situation has been fought out in front of the World's media allowing every Tom, Dick & Donald to put their two penneth in with an opinion. All of which makes the situation even sadder IMO
I won't make comment here as it is too controversial a subject & I know nothing of the details., apart from what has been in the press, which is, afterall opinion mostly. I personally think the donated money should be returned. If they want to set up a charitable foundation in Charlie's name - fine, BUT, people donated to help with medical care, not a foundation!


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## Lexiedhb (Jun 9, 2011)

They've now requested to bring him home to end his time, but the equipment he needs can't be moved apparently.


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## Elles (Aug 15, 2011)

Sadly there are probably many parents who would like to bring their terminally sick children home, but are unable to and have to let them die in hospital. They would regret it if they took him home and it caused him unnecessary suffering in his final hours.


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## Calvine (Aug 20, 2012)

Lexiedhb said:


> but the equipment he needs can't be moved apparently.


And apparently (according to news just now) would be too large to fit thro' their door . . .


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## rottiepointerhouse (Feb 9, 2014)

I'm sure there is a children's hospice with room to accommodate the equipment once they switch over to palliative care.


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## DoodlesRule (Jul 7, 2011)

rottiepointerhouse said:


> I'm sure there is a children's hospice with room to accommodate the equipment once they switch over to palliative care.


According to something I read there is but the parents do not want to go there just home


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## rottiepointerhouse (Feb 9, 2014)

DoodlesRule said:


> According to something I read there is but the parents do not want to go there just home


Yes I read that back in June they did want to take him to a hospice but GOSH refused to let them. Since accepting he is going to die they want to take him home to bath him and let him sleep in his own cot. I hope they can come to a compromise and perhaps take his cot to the hospice.


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## Elles (Aug 15, 2011)

The latest I read is that the parents do now understand that taking him to their flat isn't possible and are looking at a hospice again.


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## Calvine (Aug 20, 2012)

Elles said:


> looking at a hospice again.


I can't see that a hospice would offer more than GOSH quite honestly. And Charlie has no idea if he's in a hospice or where he is now...this is obviously something for the parents' peace of mind. What a sad state of affairs.


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## Goblin (Jun 21, 2011)

Okay, from the daily fail and cannot find any collaboration to the story (would appreciate it if someone could).



> They had said their 'last wish' was to bathe him and put him to bed before he died but have now found a doctor to help him to a hospice and Charlie's nurses have volunteered to work 12 hour shifts to care for the little boy to the end.


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## Elles (Aug 15, 2011)

Goblin said:


> Okay, from the daily fail and cannot find any collaboration to the story (would appreciate it if someone could).


It's in the Telegraph and BBC news too.


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## Goblin (Jun 21, 2011)

Well done to the GSOH nurses is all I can say.


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## Happy Paws2 (Sep 13, 2008)

Thank goodness it's over, lets hope they will now let him go in peace.


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## Goblin (Jun 21, 2011)

Happy Paws said:


> Thank goodness it's over, lets hope they will now let him go in peace.


Let's also hope the parents get the support they need to be able to put their life together again.


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## rottiepointerhouse (Feb 9, 2014)

Calvine said:


> I can't see that a hospice would offer more than GOSH quite honestly. And Charlie has no idea if he's in a hospice or where he is now...this is obviously something for the parents' peace of mind. What a sad state of affairs.


I think if you read their statement in full (from the Charlie's Fight page) it seems the just don't trust the doctors at GOSH but do thank and praise the nursing staff so I think given their baby is about to die its fair enough to let them go somewhere they will feel supported and loved whether that is justified or not.

http://www.charliesfight.org/


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## Jobeth (May 23, 2010)

Sadly it hasn't yet been resolved. They have agreed to the hospice, but need an intensive care specialist. Whilst he can transfer to the hospice he can only stay for the day without the specialist. His parents want him to stay for a week. If they don't agree by 12 tomorrow, then he will basically transfer and pass away shortly afterwards. A hospice would be a better option for the parents whether they were in dispute or not.


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## suewhite (Oct 31, 2009)

They have fought the biggest fight of there lives, but it is now time to stop and let Charlie go and not inflict anymore on this poor little boy just let him drift away in hospital.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> I think if you read their statement in full (from the Charlie's Fight page) it seems the just don't trust the doctors at GOSH but do thank and praise the nursing staff so I think given their baby is about to die its fair enough to let them go somewhere they will feel supported and loved whether that is justified or not.


Hardly surprising. They didn't even believe GOSH when they were told back in December 2016 that Charlie had suffered irreversible brain damage. The parents actually disagreed with the medical teams assessment of the mri scan and said it showed his brain was normal!


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## rottiepointerhouse (Feb 9, 2014)

cbcdesign said:


> Hardly surprising. They didn't even believe GOSH when they were told back in December 2016 that Charlie had suffered irreversible brain damage. The parents actually disagreed with the medical teams assessment of the mri scan and said it showed his brain was normal!


Seriously none of that matters now, all that matters is that they are helped to let him go and that needs to be by people they trust, they don't trust the doctors at GOSH and it doesn't matter what anyone else thinks about the rights or wrongs of that. Again I can only compare to how I've felt when its been time to let one of my dogs go and I know 100% I would not let a person (expert or not) whom I did not trust and respect in the same room let alone do whats necessary. I think its time for GOSH to accept that and let the parents have this one bit of control over what happens to their son.


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## emmaviolet (Oct 24, 2011)

Jobeth said:


> Sadly it hasn't yet been resolved. They have agreed to the hospice, but need an intensive care specialist. Whilst he can transfer to the hospice he can only stay for the day without the specialist. His parents want him to stay for a week. If they don't agree by 12 tomorrow, then he will basically transfer and pass away shortly afterwards. A hospice would be a better option for the parents whether they were in dispute or not.


I really struggle to comprehend anyone wanting their child to continue to suffer for a further week, knowing that all of the doctors can actually agreed that he seems to be in pain and discomfort.
The sad fact is, there will never be enough time, even if they had another year, but they have had a long time to try to come to terms with it, it was actually ruled he should come off of life support in April, so they have spent a lot longer with him since the ruling in April.

Even if they had the specialist, it's been stated that no hospice is licensed to be an ICU, hence the time limit there.


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## Jobeth (May 23, 2010)

I agree with the judge that sooner rather than later would be better as he said he was concerned when the legal case started that there was a possibility that he was in pain. GOSH are ok with him moving, so it should be fine. A member of family works in a special baby care unit. When I asked her she thought that a hospice was more appropriate. They offer holistic care and it will be more like being at home. The most important aspect is the care that they offer to the family afterwards. They are going to really need that support.


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## Zaros (Nov 24, 2009)

From the information I've been reading in the newspapers it's time to let Charlie go.

And that's the most courageous thing they could ever do for him now.


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## MilleD (Feb 15, 2016)

Whilst I do have sympathy with the parents. I am bewildered that after all this, they are still arguing.


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## Charity (Apr 17, 2013)

My heart sinks every time there's another court appeal, Let the poor little mite rest in peace.


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## DoodlesRule (Jul 7, 2011)

We all only know what is being said in the Press, the Judge involved has said:

"Mr Justice Francis said 'people who know almost nothing' about the case should refrain from giving opinions based on their feelings rather than facts" 

I think he is right. Rest in peace little one and hope his family can find the strength to rebuild their lives


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## Happy Paws2 (Sep 13, 2008)

Charity said:


> My heart sinks every time there's another court appeal, Let the poor little mite rest in peace.


Yes it's time to let him go, but I don't they will, I think they want him to have his Ist Birthday.

I feel for them, but I really think it's always about what they wanted, not what was best of Charlie.


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## cbcdesign (Jul 3, 2014)

Happy Paws said:


> Yes it's time to let him go, but I don't they will, I think they want him to have his Ist Birthday.
> 
> I feel for them, but I really think it's always about what they wanted, not what was best of Charlie.


Yes I am afraid I agree. I would not be surprised if this drags on for another week or two at least and all the while Charlie may be in pain! *That matters*!


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## sarybeagle (Nov 4, 2009)

A hospice is where this little soul needs to be. As great as a hospital like GOSH is a hospice will be more supportive and able to give time to the family in all aspects, counselling, respite (however brief)

All along I've felt it 'cruel' for lack of a better word that it was string out in court and all that money was raised and now won't be used how it was raised. 
The treatment was always going to be experimental. For me I really couldn't go thru with that. I appreciate being in their shoes etc etc. But it had a 90% fail rate. Not to mention. The strain on him moving him that far.
All the precious time they've left should be spent with him, not in court again and again. 
It's also sad seeing how ill and worn down they both look. The strain on them is so clear to see. 

I just hope his needs are paramount for his remaining days. It feels like it's been the parents needs and wishes that keep being upheld.


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## Gemmaa (Jul 19, 2009)

BBC just now....
"_Terminally-ill Charlie Gard will be moved to a hospice and have his life support withdrawn soon after, the High Court has ruled._"


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## grumpy goby (Jan 18, 2012)

sarybeagle said:


> A hospice is where this little soul needs to be. As great as a hospital like GOSH is a hospice will be more supportive and able to give time to the family in all aspects, counselling, respite (however brief)
> 
> All along I've felt it 'cruel' for lack of a better word that it was string out in court and all that money was raised and now won't be used how it was raised.
> The treatment was always going to be experimental. For me I really couldn't go thru with that. I appreciate being in their shoes etc etc. *But it had a 90% fail rate. Not to mention. The strain on him moving him that far.*
> ...


Not to mention the fact the Dr who had offered the treatment admitted in court to not having reviewed Charlies case specifically, looks at any reports, test results, scans; nor examine himself until very very recently. Also that he had a financial interest in the treatment. It was cruel on his part to offer the parents blind hope.

Heartbreaking for all involved, and I include the GOSH staff treating Charlie in that, but especially his parents who I agree are showing signs of massive strain and heavy hearts


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## stockwellcat. (Jun 5, 2015)

So, so sad. Must be heartbreaking for his parents, family and everyone involved. Charlie will soon be free from his horrible illness


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## rottiepointerhouse (Feb 9, 2014)

sarybeagle said:


> A hospice is where this little soul needs to be. As great as a hospital like GOSH is a hospice will be more supportive and able to give time to the family in all aspects, counselling, respite (however brief)
> 
> All along I've felt it 'cruel' for lack of a better word that it was string out in court and all that money was raised and now won't be used how it was raised.
> The treatment was always going to be experimental. For me I really couldn't go thru with that. I appreciate being in their shoes etc etc. But it had a 90% fail rate. Not to mention. The strain on him moving him that far.
> ...


Really? How have their wishes and needs been upheld? They didn't get to take him to the US, they didn't get to try him on the drug they wanted to, they were refused permission to either take him home or to a hospice some months ago, the European Court of Human Rights refused to hear the case, having accepted palliative care they still didn't get to take him home and now for the end of his life they still are not getting the few days they wanted with him in a peaceful non hospital environment to prepare themselves to let him go. Seems like they didn't get much to me


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## Happy Paws2 (Sep 13, 2008)

rottiepointerhouse said:


> Really? How have their wishes and needs been upheld? They didn't get to take him to the US, they didn't get to try him on the drug they wanted to, they were refused permission to either take him home or to a hospice some months ago, the European Court of Human Rights refused to hear the case, having accepted palliative care they still didn't get to take him home and now for the end of his life they still are not getting the few days they wanted with him in a peaceful non hospital environment to prepare themselves to let him go. Seems like they didn't get much to me


I'm sorry, but I think they were going against the hospitals advise, this poor little boy has been kept alive with no hope of getting any better, even with the US doctor saying he may be able to get him to smile, he would still be deaf, blind, unable to breath on his own, unable to eat.

Would you want that for your child???


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## sarybeagle (Nov 4, 2009)

rottiepointerhouse said:


> Really? How have their wishes and needs been upheld? They didn't get to take him to the US, they didn't get to try him on the drug they wanted to, they were refused permission to either take him home or to a hospice some months ago, the European Court of Human Rights refused to hear the case, having accepted palliative care they still didn't get to take him home and now for the end of his life they still are not getting the few days they wanted with him in a peaceful non hospital environment to prepare themselves to let him go. Seems like they didn't get much to me


Maybe upheld is the wrong word. #brainfog
But it seems, from my POV, that it's been about the parents needs/wishes mostly mentioned or quoted or shown on TV. Their wants for taking him to USA. 
They want to take him home.
They've denied to themselves how poorly their son is I think, a total natural reaction and the start of the grief patten.

I've not seen his needs mentioned as much as theirs. They want him home for them, that little boy won't know where he is surely?!
They've challenged medical professionals at each and every step, from what I've seen/read.

How many other parents are in similar situation in that exact hospital and they don't request taking their child away/home/abroad. How many have had to accept the kindest thing for their child is to stay where they are and slip away. 
I'd be at my child's bedside savouring every moment rather than in court/on TV shows etc.


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## Happy Paws2 (Sep 13, 2008)

I sometimes wonder who they are thinking of, Charlie or themselves.


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## Elles (Aug 15, 2011)

They probably aren't thinking straight at all. Lawyers and placard waving demonstrators probably aren't helping either.


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## sarybeagle (Nov 4, 2009)

I just think Charlie should be allowed to die with dignity. Not arguments and I'd hate for the parents to look back and think they did the wrong thing. 
I understand a parents love can be blinded, hell all love can be. 
I don't know. Like you say @Elles I bet lawyers are rubbing their hands over this  the parents have had the goal posts moved, from bleeding trump and the pope getting involved I think rose tinted glasses and with many people behind them they saw a chance and went for it.


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## MilleD (Feb 15, 2016)

sarybeagle said:


> *I'd be at my child's bedside savouring every moment rather than in court/on TV shows etc*.


This, this, this. 100%


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## rottiepointerhouse (Feb 9, 2014)

Happy Paws said:


> I'm sorry, but I think they were going against the hospitals advise, this poor little boy has been kept alive with no hope of getting any better, even with the US doctor saying he may be able to get him to smile, he would still be deaf, blind, unable to breath on his own, unable to eat.
> 
> Would you want that for your child???


Of course they are - that is what all the court cases have been about - they do not agree with the hospital so have challenged their decisions - did you read the link I posted to their page which explains why they have done what they have? Would I want that for my child? I have no idea anymore than anyone else who hasn't been through the exact same situation knows what they would do. There but for the grace of god ......



sarybeagle said:


> Maybe upheld is the wrong word. #brainfog
> But it seems, from my POV, that it's been about the parents needs/wishes mostly mentioned or quoted or shown on TV. Their wants for taking him to USA.
> They want to take him home.
> They've denied to themselves how poorly their son is I think, a total natural reaction and the start of the grief patten.
> ...


I suppose its the only point the media can show though as none of us can ask Charlie so we can only listen to what the parents think. Yes they have challenged the GOSH team because they don't agree with them, I'm sure we all know what it feels like to lose faith in doctors. How do you know for sure what you would be doing - if you honestly believed (which they do) there was a chance another expect could help your child are you honestly saying you would not have tried.



sarybeagle said:


> I just think Charlie should be allowed to die with dignity. Not arguments and I'd hate for the parents to look back and think they did the wrong thing.
> I understand a parents love can be blinded, hell all love can be.
> I don't know. Like you say @Elles I bet lawyers are rubbing their hands over this  the parents have had the goal posts moved, from bleeding trump and the pope getting involved I think rose tinted glasses and with many people behind them they saw a chance and went for it.


If you read the link I posted to their page they explain that the lawyers are doing it free of charge and won't even accept a cup of coffee from them.


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## Vanessa131 (Nov 16, 2014)

rottiepointerhouse said:


> Really? How have their wishes and needs been upheld? They didn't get to take him to the US, they didn't get to try him on the drug they wanted to, they were refused permission to either take him home or to a hospice some months ago, the European Court of Human Rights refused to hear the case, having accepted palliative care they still didn't get to take him home and now for the end of his life they still are not getting the few days they wanted with him in a peaceful non hospital environment to prepare themselves to let him go. Seems like they didn't get much to me


They were allowed to take him to the US in January, but the doctor in the US refused to see Charlie until the parents had all cash available. GOSH then invited him to the UK, again he refused until all of the money due was available.

The EU court did not need to hear the case as GOSH were not doing anything wrong, so it would be a pointless exercise.

They were allowed a hospice, but they weren't allowed weeks in a hopsice due to it not being suitable for Charlie's needs. Hospices in the UK are not allowed to function as NICU or ICU.

They didn't get their wishes no, sadly they put their own wishes before the needs of their child.

They have now upped the price of the tat they are selling on their Charlie website!


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## cbcdesign (Jul 3, 2014)

I am saddens me to say this but I think the parents simply refused to accept any medical diagnosis no matter how accurate it was and where it came from that was unpalatable to them. Instead they put all their hopes into that US doctor who misled them very badly, refused to treat the child until his million plus bucks was available (highly unethical if you ask me since he was suggesting using a baby as a test subject for his so called treatment) and apparently he only recently looked at the mri scans and medical records too. Even now having accepted that Charlie is beyond help they tried today to stretch out his so called life for another week refusing as they have all along to accept that he may be in pain of course.

I think they lost objectivity 6 months ago and Charlie may well have been locked in god knows what sort of hellish existence ever since then. I think some forget that when they argue on behalf of parental rights in this case.


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## sarybeagle (Nov 4, 2009)

@rottiepointerhouse if it was a experimental treatment plan with 90% risk of falling and would require a flight to the USA then no, I honestly wouldn't do it, because the chance of the quality of the life isn't (for me) enough for me to put my son through it.
Maybe being involved in palliative care for several years I'm a little hardened?
I'm very pro the right to die movement.

I just feel based on what I've read or seen (not on here) what started out as a fight against his diagnosis/prognosis became a huge media frenzy.
I dunno, just my 2ps worth of opinion x


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## rottiepointerhouse (Feb 9, 2014)

Vanessa131 said:


> They didn't get their wishes no, sadly they put their own wishes before the needs of their child.


Gosh there are some very hard hearts lacking in compassion on this forum.



Vanessa131 said:


> They have now upped the price of the tat they are selling on their Charlie website!


What exactly are you implying by that? They have already said they want to set up a foundation in his memory, do you think they are personally sat there marking up prices when their son is about to die?



sarybeagle said:


> Maybe being involved in palliative care for several years I'm a little hardened?
> I'm very pro the right to die movement.


May be. I didn't find palliative care hardened me though - much the opposite.


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## Vanessa131 (Nov 16, 2014)

rottiepointerhouse said:


> Gosh there are some very hard hearts lacking in compassion on this forum.
> 
> What exactly are you implying by that? They have already said they want to set up a foundation in his memory, do you think they are personally sat there marking up prices when their son is about to die?
> 
> May be. I didn't find palliative care hardened me though - much the opposite.


They started a website quite some time ago, they sell Charlie merchandise, magnets, baby bottles, shopping bags etc. Today the site (run by the family) have increased prices for their merchandise. So they're obviously valuing money over time with their nephew and his parents.

People with hard hearts do deny a child dignity and peace to meet their own desires.


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## rottiepointerhouse (Feb 9, 2014)

Vanessa131 said:


> They started a website quite some time ago, they sell Charlie merchandise, magnets, baby bottles, shopping bags etc. Today the site (run by the family) have increased prices for their merchandise. So they're obviously valuing money over time with their nephew and his parents.
> 
> People with hard hearts do deny a child dignity and peace to meet their own desires.


I find your comments disgraceful and disrespectful. I am aware they started a website to raise money for Charlie's treatment and that the money is now going to be used for a foundation in his memory. To call his parents hard hearted when their grief and distress is plain for all to see is too spiteful for me to understand.


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## DoodlesRule (Jul 7, 2011)

I can’t criticise the parents – they have what appears a perfectly healthy baby then a few weeks later their life has spiralled to having a terminally ill child. 

I can’t imagine the devastation of knowing your baby is going to die of any illness, but because he is being kept alive to know a physical act (removing the tubes) will mean he will die soon after must be unbearable.

Obviously a different situation entirely but my Mum has advanced dementia, it has reached the stage where food is pureed as she can no longer chew. I had to warn my Dad it can reach the stage where she may lose the swallow reflex entirely; he asked if she would be tube fed then. I had to gently tell him no it would be too distressing and not in her best interests and relayed something I had read – you would not be shortening her life but prolonging her death. Hard enough to come to terms with for someone in their 80’s, agonising when it’s your baby.


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## cbcdesign (Jul 3, 2014)

rottiepointerhouse said:


> To call his parents hard hearted when their grief and distress is plain for all to see is too spiteful for me to understand.


I agree. They are not remotely hard hearted.


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## Elles (Aug 15, 2011)

It's heartbreaking. A young couple having to watch their only child dying and having to agree to switch off the machines that keep him alive. I wouldn't want to be in their shoes for anything.


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## Happy Paws2 (Sep 13, 2008)

Finally at rest, good night little one.


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## DoodlesRule (Jul 7, 2011)

Rest in peace now little man, condolences to your family


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## MollySmith (May 7, 2012)

So sad, thinking of his parents and his family at such a sad time.


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## MilleD (Feb 15, 2016)

A week short of his 1st birthday.

RIP Charlie x


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## cbcdesign (Jul 3, 2014)

RIP little man.


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## Charity (Apr 17, 2013)

This makes your heart break. God bless you Charlie, now peacefully sleeping. xx


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## stuaz (Sep 22, 2012)

Such a sad situation overall but at least he can sleep peacefully now. I just hope the media circus now dies down and the parents can begin the grieving process and that if there is any "good" that can come out of this awful situation, that they use some of the money they raised on helping other children and/or research. That way (imo) little Charlie will have a longer lasting affect than any newspaper headline ever will.


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## SusieRainbow (Jan 21, 2013)

Sleep tight beautiful boy , God Bless.
Love and sympathy to his parents.


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## rottiepointerhouse (Feb 9, 2014)

Rest in peace with the angels little man. Love and support to Mum and Dad for the days and months to come, hope you find the strength you need.

Pope Francis

✔@Pontifex

I entrust little Charlie to the Father and pray for his parents and all those who loved him.

8:13 PM - Jul 28, 2017


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## Laney_Lemons (Mar 23, 2016)

RIP little Charlie 

Such a short time on earth  

My heart goes out to their parents , I'm sure they are utterly lost now


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## Vanessa131 (Nov 16, 2014)

Hopefully his parents will be able to access the support they need


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## picaresque (Jun 25, 2009)

Rest in peace, little one. 
So sad to think that just under a year ago his parents had welcomed him into the world, a healthy baby boy (as far as everyone knew at that point) with everything ahead of him. Life can be so cruel.


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## Alex westmore (Jul 28, 2017)

Catharinem said:


> Charlie Gard's parents have been fighting to try experimental treatment on their baby. Great Ormand St Hospital previously argued that it was not in his best interests, and his life support should be switched off.
> 
> 2pm today it will go back to court, GOSH has applied to have previous order ( to turn off life support, which they proposed as their preferred action) overturned, due to new evidence supported by 7 leading doctors in the field, that new experimental treatment has a 10% chance of helping Charlie.
> 
> ...


I shed some tears earlier when hearing of that beautiful little souls passing. My thoughts are of his wonderful parents and family. X


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## dorrit (Sep 13, 2011)

RIP Charlie.

I do hope that the doctors and management at the hospital and other will learn from this. Delaying and dragging this case through courts and the media has done no good for anyone least of all Charlie himself. Sadly we sometimes have to accept that death is not the enemy but it is how we make the journey towards it that matters.


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## cheekyscrip (Feb 8, 2010)

Bye little one. God rest your soul .
My sympathy for family and their friends.


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## emmaviolet (Oct 24, 2011)

Such a shame, but at least he is free from his suffering at last. Rest peacefully.



dorrit said:


> RIP Charlie.
> 
> I do hope that the doctors and management at the hospital and other will learn from this. Delaying and dragging this case through courts and the media has done no good for anyone least of all Charlie himself. Sadly we sometimes have to accept that death is not the enemy but it is how we make the journey towards it that matters.


I'm not really sure the hospital could have done anything differently in all honesty. Where parents are resisting a terminal diagnosis, even from outsiders they call in themselves, they didn't have much choice. It should have been confidential, but the parents asked to release the details into the media and gave up Charlie's anonymity.
Hopefully this is very much a one off.


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## dorrit (Sep 13, 2011)

emmaviolet said:


> Such a shame, but at least he is free from his suffering at last. Rest peacefully.
> 
> I'm not really sure the hospital could have done anything differently in all honesty. Where parents are resisting a terminal diagnosis, even from outsiders they call in themselves, they didn't have much choice. It should have been confidential, but the parents asked to release the details into the media and gave up Charlie's anonymity.
> Hopefully this is very much a one off.


This is sadly true , we have become a society where death is regarded as being the un natural instead of being seen as the final and natural porgresson of things. We are told to fight death at every turn and I dont think that this is always the right way to go.


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## Happy Paws2 (Sep 13, 2008)

dorrit said:


> This is sadly true , we have become a society where death is regarded as being the un natural instead of being seen as the final and natural porgresson of things. *We are told to fight death at every turn and I dont think that this is always the right way to go.*


That's so true, they try and keep us alive even when there is hope, when it's time to go why don't they just lets us.


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## Happy Paws2 (Sep 13, 2008)

emmaviolet said:


> I'm not really sure the hospital could have done anything differently in all honesty. Where parents are resisting a terminal diagnosis, even from outsiders they call in themselves, they didn't have much choice.* It should have been confidential, but the parents asked to release the details into the media and gave up Charlie's anonymity.
> Hopefully this is very much a one off.[*/QUOTE]
> 
> *I don't think we've heard the end of this, I'm fear Charlie's funereal with be a media circus. I just hope I'm wrong!!*


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## rottiepointerhouse (Feb 9, 2014)

Quite an interesting discussion about this case

http://www.bbc.co.uk/news/health-40644896


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## Calvine (Aug 20, 2012)

So sad for his parents; but saying that, I imagine GOSH must see so many terminally ill children every day whose parents suffer the same when their child dies.


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