Charlie Gard

From news.sky.com/story/timeline-parents-battle-to-save-charlie-gard-10914755:

September 2016

Charlie is taken to hospital at eight weeks old after he begins losing weight and strength, with his parents describing how "none of us have been anywhere near home since".

How can his parents be accused of being selfish? Of course they have been totally focused on their child's needs for almost a year, and if this was my child I would be fighting as they are to the very end of his life. I don't think it is possible to overestimate how much it would have meant to then to be able to take him home and to lie him in his own cot, to love him, nurture him as they have longed to do since the moment he was born and as they have been unable to do properly since he was eight weeks old. I realise they have now accepted this is impossible but I feel so very sad for them, it was such a little thing to ask at the end of his life and would I'm sure have brought them great comfort in the months and years to come. I really fear for their mental health, and agree with Tegan that I have never seen anyone look so haunted and completely finished. My heart truly goes out to them.

They raised the million,

Yes, and it would be a generous gesture to donate some of it to GOSH or use it to buy some equipment in Charlie's name, perhaps?

the money is going to a foundation in Charlies name to research the condition,if thats what they want to do with it it has to be their choice ,it was raised in his name FOR him .

A little thing to ask but a big thing to achieve.

the money is going to a foundation in Charlies name to research the condition ,THEY ALREADY SAID THATS WHERE IT WAS GOING

sorry my capitals stuck on ...oops

All right, calm down...

x posts!

The parents are still not happy with the proposed arrangements for Charlie - GOSH want his life support system turned off after a short while in the hospice, while his parents want a longer time.

They have until noon on Thusday to come to an agreement.

I hope Charlie's Army don't set up camp outside the hospice.

His parents want longer before they bury him, that's wrong?

They have agreed to hospice care now:

www.bbc.co.uk/news/uk-england-40733491

Not wrong but maybe unrealistic? It sounds as though there is difficulty in finding a hospice that will take him.

The judge's statement read out on the News this evening does make it sound as though he is becoming exasperated. His judgement was three months ago when he granted extra time.

Understandable they were hoping for a week with him before switching off the machines, his first birthday would be so special for them

AB, there is nothing wrong with that desire if the medical experts felt it would not cause the child distress or pain. As I read the situation, admittedly from news bulletins and papers, both medical staff and the judge believe Charlie is more likely to suffer if his life is prolonged. I think the judge is concerned that the private doctor does not have the expertise for this particular situation/condition, experienced though he may be. The parents are seeking a specialist paediatrician but as I said in a previous post they are very thin on the ground. I note several of the staff who have nursed him are willing to give of their free time to help the parents through this. I believe the parents should be left to make their decision and allowed to say 'goodbye' to their child without the constant media attention.

Isn't there going to be a problem in the future with other families with sick babies requesting unrealistic things that the NHS can't possibly afford? The fact is, this couple have a terminally ill child, who is quite possibly in pain, and they can't let go as a result of being led to believe the child could be cured by a doctor from America who didn't even come over to see him till quite recently and has a financial interest in the treatment offered? I do feel desperately sorry for the parents, but probably not in the same way or for the same reasons that a lot of people do.

This drug is experimental and unproven so, even if administered earlier there is no reason to suppose this would have 'cured' Charlie, sadly.

Yes I agree Tegan the interference from Trump and the Pope was unbelievable as well .That's to say nothing of the rest of the media circus. Can't help but feel these poor parents have been victims too.

They clung to hope Jalima. Any crumb of hope must have felt like a lifeline when they found themselves in an unimaginable situation. As others have said, I don't think they would have been able to think rationally or logically. And I suppose one day there may well be a breakthrough in treatment for this condition; who's to say this might not have been it? Unlikely I agree, but wouldn't we all want our child to be the one who was the first to benefit? I can't see that they have done or are doing anything wrong.

Sadly I think their story has run its course in media terms now. People are ready for the next story, hence the growing impatience with these patents. But this is their lives.

Did these parents request unrealistic things from the NHS Tegan ?

I think the request to take him home was unrealisitic. I realise that this does happen a lot but it concerns me that people may request the same in circumstances where it is not possible.Much as this tragedy has taken it's toll on them, I also feel the news media has sucked the life blood out of them.

Just wondered if anyone has seen the film Lorenzo's Oil. This case has brought it to mind.

Yes, I remember the film very well. It was terribly distressing, so much so that my husband said he couldn't watch it any more - though I watched to the end.

Lorenzo lived to the age of 30. I suppose we will never know if there was any quality to his life, but it doesn't sound great. The New York Times reported, on the death of Lorenzo's father in 2013:

"From about the age of 8, Lorenzo was paralyzed and blind, unable to speak, dependent on a feeding tube and kept alive by round-the-clock nursing care and the nearly full-time ministrations of his parents. They talked to him constantly and insisted that visitors do likewise, though no one could be certain about his level of awareness. His parents believed that Lorenzo recognized their voices, loved music and enjoyed being alive.

"Mr. Odone conceded, mainly in interviews he gave after his wife died in 2000, that he had sometimes wondered if that was enough of a life to justify the extraordinary lengths to which he and his wife had gone."