‘Beautiful’ Charlie Gard dies after life support withdrawn
‘We are so proud of you’ say parents as fight to save their terminally-ill boy ends
Charlie Gard has died just days ahead of his first birthday from a rare genetic condition, following a legal battle fought by his parents that attracted worldwide attention.
A court had ordered the 11-month-old to be moved to a hospice from Great Ormond Street Hospital (GOSH) where his life support would be withdrawn.
Charlie’s parents Chris Gard and Connie Yates had fought a lengthy legal challenge to take their severely ill baby son to the US for treatment.
The plight of the baby boy saw hundreds of supporters – called Charlie’s Army – lending their voices and money for him to be given treatment, with £1.35 million collected via an online fundraising site.
In a statement issued on Friday, Ms Yates said: “Our beautiful little boy has gone, we are so proud of you Charlie.”
A day earlier she had claimed the couple were “denied” their “final wish”
when a High Court judge approved a plan to see Charlie moved to a hospice and have his life support withdrawn soon after.
His parents had pleaded to be allowed more time with him, after their earlier request to take him home to die also failed.
Announcing the end of their five-month legal challenge on Monday, Mr Gard gave an emotional speech on the steps of the High Court when he said: “We are so sorry that we couldn’t save you.”
Charlie, who was born on 4 August last year, had a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage.
Described as “perfectly healthy” when he was born, Charlie was admitted to hospital at eight weeks and his condition progressively deteriorated.
The couple said they wanted to take their son across the Atlantic for nucleoside bypass therapy, but specialists at GOSH in London, where Charlie was being cared for, said the treatment was experimental and would not help.
Pope Francis and US president Donald Trump weighed in to the debate, with the Vatican press office saying the pontiff prayed for “their wish to accompany and treat their child until the end is not neglected”.
The protracted legal battle saw the couple take their case to the High Court, Court of Appeal and Supreme Court – all of which ruled life support treatment should end and Charlie should be allowed to die with dignity.
Judges at the European Court of Human Rights refused to intervene in the case. The couple also said they had been denied their final wish to be able to take their son home to die and felt “let down” following the lengthy legal battle.
Paying tribute to their son following the end of their legal challenge the couple, both aged in their 30s and of Bedfont, west London, had described him as an “absolute warrior”.
On Monday Mr Gard said: “Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you. We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.”
At the time Charlie’s parents added they believed their son might have been saved if experimental therapy had been tried sooner.
Ms Yates said time had been “wasted”, adding “had Charlie been given the treatment sooner he would have had had the potential to be a normal, healthy little boy.”
Doctors at GOSH did not agree, with lawyers representing the hospital saying the “clinical picture” six months ago had shown irreversible damage to Charlie’s brain.
They said the “unstoppable effects” of Charlie’s rare illness had become plainer as weeks passed.
The story of Charlie Gard has been tragic from start to finish. No-one can fail to have been touched by the agony the family of the 11-month-old baby has gone through. The situation that Charlie’s mother and father faced was every parent’s nightmare.
One of the saddest aspects of the case was that Connie Yates and Chris Gard found themselves caught up in a high-profile legal battle which must have made it even harder for them to cope.
In the end, they lost their legal battle, and their son. Their hopes for experimental treatment, for Charlie to be allowed to die at home, and finally for him to continue to receive life support in a hospice for several days, were all dashed.
Great Ormond Street Hospital has said it will examine what it can learn from the case.
It is difficult to see how the ultimate outcome could have been avoided, but it is clear there was a breakdown in trust between Charlie’s parents and the doctors.
In the end, it was decided the loss of the child could not be feasibly prevented – but the parents’ heartbreaking experience was worse than it should have been.