Charlie Gard

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.

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

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)?

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.

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.

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...

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.

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.

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.

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.

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.

The parents have support from seven doctors

Which 7 doctors, Annie, please?

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

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.

last year a friend of mine gave birth to a lovely little boy. he really was beautiful and she and her partner loved him very much - and it showed in all the photos.
however at three months it was discovered that he had a tumour on his brain and underwent a long operation but they could only remove about two thirds.
they spent time in hospital with him and learned how to give him all the medicines he needed and he went home [he also went to scotland to meet his grandparents].
however a few months later it was discovered that the tumour had grown and he also had secondary tumours [although i can't now remember where they were] and it was inoperable.
my friend and her partner got married at their son's bedside as he couldn't leave the hospital.
all her friends were given the message that his life support would be turned off the following wednesday which gave people chance to go and say their goodbyes on the monday and tuesday.
his life support was turned off and they were with him when he took his last breath. everyone who either knew him in person or by photo [i was the latter as i couldn't travel to see him] were devastated.
it is now time for charlie's life support to be turned off - i can't hear to think that he's going to be suffering for much longer. i know it's going to be hard for the parents but they should think of charlie now - he's never, ever going to get better and they should be saying goodbye now.

So many signing the petition etc, supporting the parents, overlook that the child has rights himself. Where a person of any age cannot consent etc, the courts will evaluate all of the available information and make a decision on his/her behalf.

I'd be desperate not to turn off the life support but I hope I'd have the strength to do it. Do they realise what their lives will be like if he never improves? Since he makes no sound, how can they know if he is in pain. The media circus will make it even harder, with some criticising them whichever path they take.

I don't think so Ana in fact I think I got it wrong I think she was referring to a child in Spain not America. But I'm not sure of the child's exact condition.

Unless you can walk on their shoes. The parents shouldn't be judged. Who said "where there is life there is hope" doctors have been wrong before and will be wrong again.

My wonderful mother who I lost last year always disagreed with the Biblical quote of "Faith Hope and Love and the greatest of these is Love"
She always said that hope was the greatest.
You can have all of the love in the world -and Charlie's parents so obviously do- but if they have no hope what good is love.
And where there is life there is hope. Keep going - keep fighting - keep praying for a good outcome.

If the American doctors are so convinced that they can help Charlie or even cure him why are they not over here with their knowledge and their cure for him it would better for the boy not to be moved and they could prove to the BMA that they can do this. Genetics can be difficult to cure I have a genetic illness I will have for the rest of my life and they can mutate.
So get those doctors over here from America and prove what they are saying can be done share there knowledge.

Devongirl, like everyone posting here, all info about this little one and his parents I hear on the news

Good point, sweetcakes, though no doubt they would argue that they need specialist equipment.

Annie I was actually hoping you would share some info about these doctors but never mind, I will look at the BBC.