Charlie Gard

We are alays crying out for being able to make the decision to die with dignity, and even severely sick people are denied this right. How very, very sick must this child be that doctors and courts decide to let it go in pease? It is heartbreacking for the parents and my heart goes out to them but please be realistic and let your baby go...

But NellD if the doctors hadn't already 'played god' as you describe it, this poor little scrap would have died long ago. Their Hippocratic oath tells them to first do no harm, they must now firmly believe that this baby is suffering before taking the stance that they have. It's a dreadful situation all round but it wouid appear that the mother in particular has an unrealistic view of the outcome of any experimental treatment. Can you imagine the howls of protest if an experimental treatment was suggested for a baby in other circumstances?? It's as if he's not got any real hope so what the hell, let's just blunder on and give him yet more treatment. This is not - and should never have been - about the parents. Let him be.

"Speak through the earthquake, wind and fire,
Oh still, small voice of calm"

Ah - I think we understand now Nell what I meant by my comment was that rather than young fit people wanting to get rid of older people, I meant that any older person wanting to choose to end their own life themselves couldn't easily do that - we aren't allowed easily to make that decision but may be kept alive when we don't want to be - hence the whole dignity in dying debate. Sorry I wasn't clearer

Not we but I

I don't understand why GOSH don't let the child go. If the parents think that he will be cured or whatever, let him go. They have done their best for him.
Personally, had he been my child, if I knew what the future held for him, I would probably have allowed him to die with dignity long ago. But, not having lost a living child [only three miscarriages], I don't actually know what I would do...

Sparkle do you think the parents should have the last word in this particular case or that as a general principle parents should always have the last word?

GOSH have to abide by what the courts have ruled - he could only leave the hospital/ country if the courts say so.

Perhaps if the medicine can be sent here and the child not have to travel there's no harm in trying it. Provided the parents are prepared to live with the result. There's talk of an improvement of only a few per cent. But what sort of improvement? Vision? Hearing? Being able to move or breathe on his own? Do they know or is he being used as an experimental Guinea pig?

Mattie I suspect the answer lies within the Hippocratic oath, as Rigby has said; if they consider (jointly and with the courts) that letting him go will cause him harm, they are going against that oath.

My feelings on this seem to change daily. I think I know what I would do but I suppose it's different when you are actually in that position. One thing I definitely wouldn't do is broadcast it over social media. I would want privacy not a media circus .

devon, I didn't mean die - I meant let the parents take him away for other treatment.

Mattie, yes, I realise that, but GOSH opposed that.

Why?

Charlie's mother has said that one child treated in America was in a similar condition to Charlie and is now learning to ride a bike. She has also said that several children given the treatment have not just stabilised but have continued to improve. She is realistic about the fact there is only a 10% chance of the treatment working but she wants him to have that chance, and if it doesn't work she will 'let him go'. It seems a very normal request for any parent to make, and I don't see why the treatment can't be given in this country. I'm sure that would be the parents' preference rather than having to transport their very sick baby halfway across the world.

Rigby Should parents always have the last word? Not always because each case is individual, but as baby Charlie's case has become worldwide news with so much interference - even from Trump and the Pope for goodness' sake who know nothing of the medical side of his case - then I think the parents in this particular instance should have the final say.

I agree devongirl and we can't know how the poor little lad is feeling, whether he's in pain or not. After all this time I would think it's highly unlikely that he'll ever recover.

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.

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 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.

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 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.

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

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.

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

Bluebelle so brave.