WE’LL FIGHT ON TO SAVE CHARLIE
After judge rules baby must be allowed to die, parents vow...
THE devastated parents of a desperately ill baby last night vowed to fight on after a judge ruled their son should be allowed to die.
Chris Gard and Connie Yates rushed to eight-month-old Charlie’s hospital bed after an emotional hearing at the High Court.
The couple have three weeks to launch an appeal – a decision friends said they would not hesitate to take.
‘They will fight to the bitter end, they won’t give up. They love that little boy and while there’s still some hope they will carry on,’ a family friend told the Daily Mail.
As the judge’s ruling was delivered, his words were almost drowned out by a mournful wail of despair.
Mr Gard could not bear to hear the words he had dreaded, that his
‘Every parent’s worst nightmare’
beloved son should be allowed to die. Slumping forward, he sobbed ‘No’– a low mournful cry which echoed around the courtroom, while Miss Yates wept silently beside him.
The parents had begged the High Court to give their baby son his ‘one chance at life’ – experimental treatment in the US.
But Mr Justice Francis ruled that such treatment was not in Charlie’s best interests as it could not reverse his severe brain damage but could cause him pain.
The judge ruled doctors at Great Ormond Street Hospital should stop his life support treatment.
It would be impossible for his parents to get him overseas without the hospital’s help.
The couple now have up to three weeks to ask for permission to appeal – although such permission is not automatically granted. Their lawyers will have to show that they have fresh evidence or a new challenge to the law.
Great Ormond Street said Charlie’s life support would continue until a decision was made. Lawyers said they would fight the ruling.
The couple’s battle for their son has prompted an extraordinary outpouring of public support which saw 82,000 well-wishers donate more than £1.2million to fund the experimental US treatment.
But their hopes were dealt a crushing blow when the High Court judge said experts agreed such treatment was ‘very unlikely’ to improve Charlie’s condition, regardless of whether his parents could afford it.
Mr Justice Francis said he made the decision ‘with the heaviest of hearts, but with complete conviction for Charlie’s best interests’.
He told the High Court: ‘Great Ormond Street Hospital may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.’
Mr Gard, 32, a postman, appeared to know the fight was over.
As he waited for the judge’s ruling his red-rimmed eyes were screwed shut, his hands clasped over his face as his shoulders heaved uncontrollably. Charlie’s mother Connie Yates, 31, sat in silence, pain etched across her face as she stared despondently at the judge’s bench.
Dressed in a navy floral dress and sombre black cardigan, she wore a white flower pinned in her hair – a symbol of a mother’s unwavering hope.
Her father Matthew sat behind her, leaning forward to stroke his daughter’s long blonde hair in comfort. Her mother Elizabeth was absent from the hearing as she stayed behind at Charlie’s bedside in hospital.
The courtroom was cleared as the couple broke down. Moments later they were whisked out of the High Court to rush to Charlie’s bedside at nearby Great Ormond Street.
Charlie suffers from a rare genetic condition, a form of mitochondrial disease, which saps energy from his muscles, lungs and other organs. He is being kept alive by a ventilator.
His parents, from Bedfont in south-west London, are adamant he shows signs of growing stronger, reacting to their presence and enjoying their touch.
But the judge ruled that Charlie had suffered severe and irreversible brain damage and that the experimental treatment was ‘potentially painful but incapable of achieving anything positive for him’.
He said the medical experts all agreed that the US treatment could not reverse Charlie’s brain damage, and said ‘experimentation’ was not in the child’s best interests, unless it could improve his condition.
Mr Justice Francis, who had visited Charlie in hospital while hearing evidence in the case, said he sympathised with the parents’ desperation and praised their courage and dedication.
He said: ‘I want to thank Charlie’s parents for their brave and dignified
campaign on his behalf. But more than anything to pay tribute to their absolute dedication to their wonderful boy, from the day that he was born.’
Lawyers for Charlie’s parents said they wanted to challenge the ruling and take the case to the Court of Appeal.
The couple’s solicitor, Laura Hobey-Hamsher, said: ‘Connie and Chris are facing every parent’s worst nightmare.
‘They are struggling to under- stand why the court has not at least given Charlie the chance of treatment in America.’
She added: ‘Connie and Chris want me to make clear how profoundly grateful they are for all of the help and generosity they have received throughout this time.
‘This has been a difficult and painful case, and the support and phenomenal kindness of countless people has been a source of strength.’
The lawyer also said ‘lessons need to be learned’ from the case, including ‘how medical professionals face decisions such as this, how they act with sufficient speed, and how they communicate with the families of desperately ill children, such as Charlie’.
‘It is regrettable and inexplicable that much of the reasoning for their decisions only came to light after proceedings had been issued,’ she added.
The court had heard that Charlie’s parents were described as a ‘spanner in the works’ by one doctor after it emerged they were doing their own research in a bid to save his life.
A spokesman for Great Ormond Street Hospital NHS Foundation Trust said: ‘We work extremely hard to offer innovative treatments, even if it is the first time they have been tried, when we believe they can benefit the child.
‘In Charlie’s case we carefully considered the request for a therapy that had not been used to treat his condition. This included seeking multiple external opinions as to whether this therapy could improve Charlie’s chance of survival or quality of life.
‘The consensus, which has been confirmed by yesterday’s ruling, was that it would not.
‘Our focus now is to work with Charlie’s family to plan for the next stages in Charlie’s care.’
The hospital will talk to the family and try to agree how long they need to say goodbye to Charlie, before he is taken off life support and allowed to die.
Last night, supporters continued to donate on the couple’s GoFundMe website, despite the court ruling.
If the couple appeal successfully, the money could still be used for the intended purpose of funding treatment.
If not, Miss Yates has suggested they could set up a charity for other children with similar mitochondrial syndromes, and fund further research.
A spokesman for the website said officials would talk to Charlie’s parents about what would happen to the money if they are unable to take him to America.
Miss Yates has previously said: ‘If Charlie doesn’t get this chance we will make sure that other innocent babies and children will be saved.’