It is a heartbreaking story and I too have felt torn because of recent events.
It was so sad to hear the statement from Charlie's father the other day, we cannot imagine the pain he and Charlie's mother have gone through, but wrong of him to say if Charlie had received the proper treatment earlier, he would have been a normal healthy child. The poor little mite suffered irreversible brain damage when he had his first seizures.
Putting to one side the cost in terms of finance and specialist careers and how may other children could have benefited from those resources, it is time to let him go.
Easy for me to say I know but I'm as sure as I can be that if he were mine I'd have already made that decision. That said, my heart goes out to them at this terrible time.