Originally Posted by Twinkle0927

They say Connie has researched the condition extensively (this was the reason given for her being allowed to attend the meeting between GOSH specialists and the New York doctor earlier this week). I'm sure she has spent every waking minute looking for information about the condition. I would too if I had a child with a complex medical issue. But she can't possibly know what the doctors know. And if she does, she would know that there is no hope. I stumbled across the Facebook page and there is repeated reference to a child (in the USA, I believe) who has this condition and was in the ICU but is now riding a bicycle. One child. Clearly that child did not suffer the same extent of brain damage that Charlie has. But what happened to the others? I know it's an extremely rare condition but I did read something like 15 other children have been diagnosed. Are they riding bicycles?

Originally Posted by yellowroom

Connie might have researched extensively on mitochondrial disease, but does not have the years of medical training to put it in context.

All 15 patients with Charlie's version of mitochondrial disease have died, there are other types that affect different parts of the body, and those are the patients that have received the experimental treatment so far. The best that Charlie can hope for based on those results is a slight improvement in muscle function, eg coming off the ventilator for a few hours a day. This is the "chance" that is being campaigned for - he will never be riding that bike.

Originally Posted by yellowroom

Connie might have researched extensively on mitochondrial disease, but does not have the years of medical training to put it in context.

All 15 patients with Charlie's version of mitochondrial disease have died, there are other types that affect different parts of the body, and those are the patients that have received the experimental treatment so far. The best that Charlie can hope for based on those results is a slight improvement in muscle function, eg coming off the ventilator for a few hours a day. This is the "chance" that is being campaigned for - he will never be riding that bike.

Originally Posted by Twinkle0927

Going off in a different direction now, but how would it be here in the USA if a person was being kept alive artificially with no chance of improvement? Would the insurance company just keep paying for years and years of life support? Or would they insist that the life support is withdrawn?

Originally Posted by Pollyana

You are so right Rete, Charlie is getting the best care possible, in a hospital renowned for being the best in the world for children's care. If there was any treatment available then GOSH would have done all it could to facilitate Charlie's access to it. Facilitating meetings with the doctor from the US may result in something, who knows, if it does then GOSH will re-evaluate his treatment plan, naturally.

So many people seem to think this is a sudden issue. Its not. He's been in the care of GOSH since November. Its just come to a head because of the court action taken by the parents when GOSH advised they could do no more for him.
Equally so many people seem to think that there is treatment available somewhere. There isn't. The hospital isn't preventing access to treatment, there just is no treatment available. Heartbreaking for the whole family, and a really tough one for the staff who have cared for him for months.

Turning his case into a circus is doing no-one any good. Some of the comments on facebook are just ludicrous, abusing the staff, the hospital, the courts. People really need to take a step back and understand that everyone wants the best for him, but sometimes the best is also the saddest option.

Originally Posted by albanks2542

If these treatments were available in England kids and adults would not have to travel to america or elsewhere for so called revolutionary procedures would they? So with these different treatments not available in England and possibly being better than treatments available in England I don't see how you can see how you can say that GOSH is the best in the world for childrens care. It clearly isn't.

Originally Posted by albanks2542

If these treatments were available in England kids and adults would not have to travel to america or elsewhere for so called revolutionary procedures would they? So with these different treatments not available in England and possibly being better than treatments available in England I don't see how you can see how you can say that GOSH is the best in the world for childrens care. It clearly isn't.

Originally Posted by albanks2542

If these treatments were available in England kids and adults would not have to travel to america or elsewhere for so called revolutionary procedures would they? So with these different treatments not available in England and possibly being better than treatments available in England I don't see how you can see how you can say that GOSH is the best in the world for childrens care. It clearly isn't.

Originally Posted by moneypenny20

It clearly is. Even if he has this treatment and he 'improves' he will never leave hospital. Even the inventors of the treatment have said as much (from my understanding).

Originally Posted by PetrifiedExPat

The prognosis is bleak, this fact not helped by religious beliefs of the parents. The trip to the US is fruitless with regard to quality of life. It makes sense the US hears their appeals, due to said beliefs. British doctors are correct in this case.

Originally Posted by kimilseung

Can you tell us more about the parents views on religion? A link maybe?

Originally Posted by Jerseygirl

I'm not agreeing or disagreeing with the parents. We can speculate...but non us really know what we would do if we were in their shoes. We may think we know...but until you've been in that situation IMO we have no idea. I would like to think that I would be able to rationise the situation...what would the quality of life be...how would that affect the quality of life of any siblings...the strain on the marriage etc? The truth is...unless I was in their position I have no idea.

Originally Posted by PetrifiedExPat

Considering 70% of published research has proven impossible to replicate, for whatever reason, providing a link is fruitless. Several mediums both here and in the UK have discussed the point. I am completely open to this being refuted, of course, how can I not?

It is my opinion of the situation, I should clarify, then. Never underestimate ignorance, desperation, et al in the search for a medical miracle.

Originally Posted by kimilseung

I am confused, are you talking about other peoples religious beliefs in the matter and not the parents?