Charlie Gard

I've realised a lot of people (i'm talking personally, not people on this forum) who say the parents were selfish etc think he was like this from birth.. they don't realise that these parents took home a seemingly health baby boy, and had 2 months with him i think it was at home, with a smiling, seemingly healthy, happy, responsive little boy, who could see and hear and seem ok. When he deteriorated and went to hospital, and GOSH said there was nothing to do, wouldn't you look into things yourself if you'd had 2 months with him being ok.. You can't blame them for that. People seem to act like they had him in this state since birth and are delusional.. but if you'd had 2 months with a son who could see you and smile and hear and seem ok, i think it's harder to let go and accept than it is if they are like it from birth. He was born with it yes, but it didn't show right away so they had that time with him that they just wished and believed they could get back to. And medical evidence, albeit not GOSH, said if the attempt at treatment had started earlier in March there was a chance he could have recovered to a more normal life and not be like this, again some people seem to think they wanted the trial just to have him carry on living longer but in this poor state. They really belived there was a chance to get him a more normal life. Rightly or wrongly. And i don't think people should be judging them for that.
 
Unless you have read all the trial transcripts or witnessed all the trials, then no one is in a position to hold an opinion on this very sad situation.

Whatever the truth my thoughts are with Charlie and his parents.
 
kippaxkid74 said:
I've realised a lot of people (i'm talking personally, not people on this forum) who say the parents were selfish etc think he was like this from birth.. they don't realise that these parents took home a seemingly health baby boy, and had 2 months with him i think it was at home, with a smiling, seemingly healthy, happy, responsive little boy, who could see and hear and seem ok. When he deteriorated and went to hospital, and GOSH said there was nothing to do, wouldn't you look into things yourself if you'd had 2 months with him being ok.. You can't blame them for that. People seem to act like they had him in this state since birth and are delusional.. but if you'd had 2 months with a son who could see you and smile and hear and seem ok, i think it's harder to let go and accept than it is if they are like it from birth. He was born with it yes, but it didn't show right away so they had that time with him that they just wished and believed they could get back to. And medical evidence, albeit not GOSH, said if the attempt at treatment had started earlier in March there was a chance he could have recovered to a more normal life and not be like this, again some people seem to think they wanted the trial just to have him carry on living longer but in this poor state. They really belived there was a chance to get him a more normal life. Rightly or wrongly. And i don't think people should be judging them for that.
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I don't blame the parents at all for adopting their position and I understand why they would cling to any shred of hope. I do think the interventions of the the doctor in the US, the vatican and pro-life campaigners (when this has nothing to do with the pro life debate) are completely shameful though. You say medical evidence suggested he could have had a more normal life if treatment had started in March but there doesn't seem to be any evidence of that at all. The doctor that was suggesting this had the opportunity to visit GOSH in January and declined. He also hadn't even looked at the scans or medical records so how is he in a position to make that call over the doctors that had actually being treating him? External experts (including ones requested by the parents) assessed him in person and were all in agreement that the treatment would only serve to prolong his suffering and the process of dying. There were people with their own agendas feeding the family false hope and in the meantime certain sections of the media have chosen to portray GOSH as a disruptive force whilst completely glossing over just how gravely ill the child is.
 
Tragic.

But I have only heard "take him to America" as the solution/hope.
Why? Is there some magic fountain that would cure him? No. That's where the doctor is and that's where the drugs are.

I never heard anybody even suggest that the drugs are brought to GOSH, maybe even with a dedicated nurse/doctor to administer them and monitor improvement or not.
They raised enough money to pay for it I am sure.

Now they have to prepare to grieve and we can only hope that they can do that at their own pace and not in a media feeding frenzy.
 
geoff clipp said:
You say medical evidence suggested he could have had a more normal life if treatment had started in March but there doesn't seem to be any evidence of that at all. The doctor that was suggesting this had the opportunity to visit GOSH in January and declined. He also hadn't even looked at the scans or medical records so how is he in a position to make that call over the doctors that had actually being treating him?
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The parents said this was the case in the most recent court proceedings, before they accepted that the most recent tests reults show it is now too late as his brain and condition have worsened dramatically since the scans in March. I believe the family when they say it. They themselves said that the medical experts they found (not gosh) said if it had been done back then there would have been a chance it would work, and it is now too late to do it. He may not have looked at it in January, but looking at it all now that is the words they have come out with - that it would have worked back then but wont now.


TheBlueDune said:
I never heard anybody even suggest that the drugs are brought to GOSH, maybe even with a dedicated nurse/doctor to administer them and monitor improvement or not.
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That was suggested recently, in the most recent court meetings before the parents agreed to give up.
 
kippaxkid74 said:
The parents said this was the case in the most recent court proceedings, before they accepted that the most recent tests reults show it is now too late as his brain and condition have worsened dramatically since the scans in March. I believe the family when they say it. They themselves said that the medical experts they found (not gosh) said if it had been done back then there would have been a chance it would work, and it is now too late to do it. He may not have looked at it in January, but looking at it all now that is the words they have come out with - that it would have worked back then but wont now.

That was suggested recently, in the most recent court meetings before the parents agreed to give up.
Click to expand...


The family requested independent experts from Southampton assess the child (which they did, in person) and they were also in agreement with GOSH. There were other experts who never assessed the child, mainly Dr Hirano, who said otherwise. It's also worth noting that Charlie's form of the disease is extremely rare and only 15 other children have been recorded as having had the same condition. There is no evidence that the treatment offers any improvement in those suffering from the same type of mutations as Charlie (not even in mice) and it remains very unlikely that children suffering from the same gene mutation as Charlie will be included in any research in the forseeable future.

I do believe the family believed what they were saying however, it does look as though though they were (understandably) giving more credence to anyone telling them what they wanted to hear. As an outsider looking in, the doctors speaking in their favour had much less knowledge of Charlie's case when compared to the ones who said otherwise.
 
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