Charlie Gard

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

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.

They have agreed to hospice care now:

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

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

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

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.

x posts!

All right, calm down...

sorry my capitals stuck on ...oops

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

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,if thats what they want to do with it it has to be their choice ,it was raised in his name FOR him .

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?

They raised the million,

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.

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".

In the write ups I ve read it clearly said after a month the parents noticed he was not moving or holding his head as expected and consulted doctors (which to me implies they had taken him home ) but I agree the father has said we want him to just sleep in his own bed but I have never read that he went from maternity wing to GOSH
I think the father especially is really bitter and in his last speech saying they will let him die he is blaming the hospital, doctors and courts jfor the wait in his treatment
Both parents are still saying he would have been a normal child if he d have had the treatment earlier
They have had nearly a year of GOSH s treatment all their legal fees have been free and a million plus pounds raised for their use I think whilst understanding their great sadness and difficult situation they have been more than helped through it I m sure many people who lose their beautiful babies or children to diseases wish they could have as much support

If the baby was kept in hospital then doctors must have known there was a problem from birth.
Having nursed people on life support I would not like the responsibility of caring for someone outside a hospital environment.

Not all babies sleep in a cot from birth, many sleep in a crib, I didn't know he had been taken straight from the merternity ward to GOSH

Would blood tests have shown up the problem. They are done more or less at birth aren't they? I'm sure someone knows?

Oh, right.

I think problems with Charlie's health were picked up very quickly. He was transferred to GOSH from the hospital where he was born. His parents referred to the fact that he has never slept in his own cot so it sounds as though he was kept in hospital from the start.

Only the first month Devongirl

I hadn't taken on board that CG had been apparently healthy for so long, no wonder the parents are heartbroken.

I don't think I've ever seen two people in the public eye look so sad and haunted .