Charlie Gard

Agree Legs55, I think the cost to the NHS so far is the elephant in the room. I would hope that in due course the parents would consider at least making a donation to GOSH.

I too am appalled by the Media circus & the so called supporters of this baby & it's parents. I read an interesting article by one of the columnists in a Sunday paper. She had moved to America & within a few weeks her young son was taken seriously ill, parents were not allowed to go in the Ambulance & were removed forcibly from their child's bedside at the Hospital, she was hysterical but now realises that she was not in the right mind to help her child. I do believe the parents of Charlie Gard are too close emotionally to take on board the reality of his condition. Yes as a parent you will fight tooth & nail to get the best outcome but I also believe the Staff at GOSH will have done their best for the child. I cannot believe that this poor child will ever know anything resembling a "normal"life.

One thing really bothers me though, all the NHS resources spent on this child may have denied other children treatment, the cost must run into 1000s. What are the parents going to do with all the money raised? Are they going to donate it to GOSH?

I do believe it's time t let go, yes I'm a Mum & Gran & know I would find that difficult if it was one of mine

Wonder what the outcome of today's Court Case will be?

US, Italy, Spain and one in England though I don't think that one is at GOSH.

Which 7 doctors, Annie, please?

The parents have support from seven doctors

I agree with Devongirl. I think the mother is on a mission of principle now that she has the backing of the usual "rent-a-mob" demonstrators. Poor little mite. The same thing has happened with Grenfell! I pray and hope that he is not made to suffer too much longer either way.

Looking at the pictures of him, unable to move, blind and taped up to a machine I wonder about the nursing and help that have kept him alive. It doesn't seem right that a baby should be subjected to this for 11 months. The parents say he is not in pain, but how can they know? We have all experienced the pain when a plaster is removed, his breathing apparatus is strapped to his face. Does it need changing? If so what does he experience? we can never know. Doctors and nurses must have dealt with all the apparatus and treated him with love and care. They must have explained things and talked to the parents, it must be terrible, but I think they should let him go.

Haven't read all the posts but whilst I feel desperately for the parents I can't help thinking they are living in a fantasy world. On a recent interview Charlie's mum said the treatment might mean he could live a normal life. Whatever treatment he has he will never be able to live a 'normal' life. I personally think when they first decided they would like to try for the experimental treatment then they should have been allowed to at that point, before it all became a media circus. The doctors do an incredible job but they are not gods and if a parent wants to try something they should not have to jump through hoops to do it. Whatever the outcome of this latest court order I truly wish they can all find some peace knowing they have done everything they can for their boy.

Perhaps what some people don't realise is that this isn't about giving the child an untested drug. Charlie's condition is caused by a fault at cell level, it is literally a genetic condition. The treatment is to try to repair the faulty DNA and medical science is on the cutting edge of this kind of treatment where a problem is solved at the cell level. Treatment like stem cell therapy is another example of a groundbreaking step in health care.

The fact that the condition is so rare means there are so few cases to develop a successful treatment and it could be decades away. The parents know what the chances are of the treatment being successful.

Nobody knows how successful it might be because it is so untested.

If my child had the slim chance Charlie has from the treatment, I would grab it.

Me too Bluebell. The lack of proper support and misinformation and angst I went through still hurts and things don't seem to have got any better. I still feel guilty at not being with either parent at the end having been sent home to get some rest.

I have so much respect for you Brigidsdaughter. To have cared for your beloved son for eighteen years must have been hard physically and mentally however much you loved him. The hole he left must have been enormous.

I think it's terribly sad for the parents, but it certainly doesn't look like there's much hope for the boy. This morning on the news the mother said there was a 10% chance the US treatment would help him - not good enough odds in my book.
I've also heard they've received millions in donations for him. If that's the case, then why aren't they allowed to spend that on taking him to America to see if he can be treated? So long as the NHS doesn't have to pay...

Time to stop this wicked media circus. In agreement with the majority of posters, the time has come to reach a decision on the life of Charlie. Myself I think I would want the life support to be ended and let him die peacefully and painlessly. But then I have never been in the parents situation.

It would appear obvious from reliable information that he will have very little quality of life.

However, in the event of his death then what? These poor parents will be absolutely devastated, but so much has been brought on by themselves in their use of social media. How is it going to affect their marriage and the rest of their lives? Will they be able to go on and have more children? Parts of the media will be watching them forever and a day, and it is not beyond the realms of possibility they will be wooed with promises of huge amounts of money to tell their story.

And as one poster has pointed out in the event of Charlie's death what happens to the money raised?

I feel so sorry for the person that has to 'flick the switch' How are they going to feel? and will the unethical parts of the media rout them out? GOSH staff are arguably some of the best in the world so what is all this doing to them and how they will move forward and help other desperately sick children with the world's media watching them and asking for accountability.

The American child being held up as an example, has a different, far less severe type of mitochondrial deficiency disease. His Father's idea of cure is not mine; the boy is strapped to a chair, tube fed, incontinent, non verbal. Thats at six years old, so what happens when he is 12 or 15? MN has some very moving, personal posts from people who have made decisions to accept only palliative care and let their children die peacefully and with dignity, and from what I have read, without exception, all think Charlie should receive the same dignified but final care. His parents are in a terrible place, but so are many others who choose to keep it private, and their suffering is not any less for doing so. Sadly, those of the public who support can also turn the other way, and I am sure, sadly, that we will soon start seeing the 'what happened to all the crowd funded money' nasty stories. They may regret having opened the Pandora's box of publicity. Poor souls.

Nightowl, are you sure Charlie's mother wasn't talking about other US treatments which have had some success, such as that given to the little boy with cancer (who is now reorted to be learning to ride a bike)?

Call me cynical, but I can't help believing that the American doctors can't wait to get their hands on a human guinea pig and I don't think the publicity is doing the Americans any harm either. I just can't believe that ANY treatments will restore his brain function

BlueBelle I greatly respect your ability to do that. My other told me, when her father had pneumonia the GP told her he could treat it or not, a clear option of allowing him to die, and my mother always regretted she didn't have the strength to refuse treatment.

I do wonder in this case if, absolutely without intention, the parents are really acting in their own interests rather than the baby's.

Bluebelle so brave.

I know it's different but with both my Mum and my Dad I had to make the decision with the information the doctors could give me and what I could see for myself to allow their lives to end without added intervention As an only child there was only me to make the decision I felt the weight of the world on my shoulders but my desire to see them out of pain and in peace instead of trying to give them hours or days more, really for my needs felt the only answer I could give It has not sat easily on my shoulders and five years on I still have nightmares over it

Charlie should be allowed to die. Treatment may make his condition 'less dreadful - there is no cure. A future cure would be too late for him. People need to realise it's not like the 'flu.

The parents cannot be objective. We are hardwired to nurture, love, etc if Charlie can be kept alive in GOSH for longer to allow them to settle from the trauma of it all, they will see more clearly.

I say this as the parent of a son with severe disabilities who died in his sleep at 18. The health issues and treatment took their toll. I was devastated when he died - we loved him, protected him, nurtured him, cared for him every day and night, thankfully we put off residential care. We slept with him in hospital where he was sedated and ventilated to name him 'comfortable.

When he died, I cried and kept saying 'He'll never suffer again'.

We had another son two years younger and we used take turns going out or doing things with him. We didn't mind this as it was the only family life we knew. We had some respite. One summer we had two nights, ie one day! A few times we had a week. We were grateful for this time to breathe but never completely happy at care away from our guidance.

Anyway, enough said. I have seen treatment first hand and it's heart breaking.

Poor Charlie.

Walk a mile in someone else's shoes.
At the moment of commitment the universe aspires to assist

I just can not imagine what this little chaps parents are going through at this time and I can respect both sides of the argument,how would I feel if it was my child or DGC ? I think that I would fight as long and hard as possible for any treatment available,until you are in that position you cant make any judgement as to what to do,I feel for the parents of this little boy and prey that they are given the strength to get through this knowing they have tried every opportunity available to them.

ann I think there's a lot of misleading/ misinterpreted information about there. People hear what they want to hear so often. My understanding is that there are many many varieties of the disease Charlie has and his is particularly rare and severe. The letter from the Italian clinic refers almost exclusively to the effects on mice and then mentions 'patients' but gives no further information about that. The research is unpublished and so how can anyone judge it until it has been peer reviewed and opened up to other doctors? I wonder what evidence the judge will be given today? Has anyone read 'The Children Act' by Ian McEwan?

I read that too Ann. In fact the article said it hadn't even been tried on mice. So much mis-information around. Mr Trump may have a point about the honesty of the media.

How sad that this family were not able to deal with this in privacy. There is no hope of a rational decision now that it has gone global. Having got to this stage I guess the treatment must be tried; but the scenario of it keeping him alive but with no quality of life is the one that is the biggest worry for all.

I am surprised to read that some children have already has this treatment. At the time the publicity started it wasd stated it was very experimental and no children had been treated.