As judge rules Charlie must die in hospice, parents release this new picture and say: ‘We’ ve been denied our final wish’
Judge rules they can’t have extra time to bid farewell to their sick son in ‘most loving way’
CHARLIE Gard’s parents last night said they had been denied their chosen way of saying their final goodbyes.
After abandoning their legal fight to take their desperately-ill baby son to the United States for treatment, they had asked for him to be allowed to die at home.
After a High Court judge ruled on Wednesday against this, they asked for up to a final week with him at a hospice. But an agreement on his care could not be reached with Great Ormond Street.
The hospital had insisted Charlie could not spend any significant time outside an intensive care facility.
Mr Justice Francis said Charlie, who suffers from a devastating muscle-wasting disease, will now be taken to the hospice in a secret location where doctors will stop life- support treatment shortly after he arrives.
His parents, Connie Yates and Chris Gard, said that despite securing a team of doctors and nurses and a specially equipped property, they had ‘lost control’ over their son’s death.
Miss Yates, 31, said: ‘We just want some peace with our son, no hospital, no lawyers, no courts, no media – just quality time with Charlie away from everything to say goodbye to him in the most loving way. Most people won’t ever have to go through what we have been through, we’ve had no control over our son’s life and no control over our son’s death.’
The irrevocable court ruling came as home videos emerged showing Charlie
‘Such severe and complex needs’
as a newborn – weeks before his illness was diagnosed. The tiny baby is seen grasping at a two-week birthday card on a changing mat at his parents’ flat in Bedfont, west london, last August.
in another film the little boy looks up at the camera and makes his mother giggle as he kicks his legs and waves his arms. Weeks later, Charlie fell ill and tests that October revealed he was only the 16th person in the world to suffer a rare strain of mitochondrial depletion syndrome.
Since then, Miss Yates and Mr Gard, 33, have kept a bedside vigil at Great Ormond Street in central london.
Their son’s lungs became too weak to function on their own and the hospital went to the High Court in March claiming he was suffering and should be allowed to die with dignity.
His parents disputed the hospital’s heart-breaking diagnosis – claiming experts in the US offered hope of survival. But Mr Justice Francis ruled in favour of the hospital in April and Charlie’s parents failed to overturn the decision in the Court of Appeal and Supreme Court.
They also failed to persuade European Court of Human Rights to intervene.
The couple abandoned their legal fight on Monday after concluding that Charlie had deteriorated to the ‘point of no return’. But they then became embroiled in the new fight with doctors over his end- of- life arrangements. Their final wish had been to be allowed up to a week at a hospice to say goodbye after their plea to let Charlie die at home was rejected.
After an appeal the couple found two specialist doctors and a team of nurses willing to care for the 11-month-old in his final days.
But Mr Justice Francis yesterday said this would not be possible after Great Ormond Street could not agree on the plan.
The final ruling came eight days before what will be Charlie’s first birthday next Friday.
A Great Ormond Street Hospital spokesman yesterday insisted it had tried ‘absolutely everything’ to grant Charlie’s parents’ wishes. He said: ‘This included exploring the unprecedented step of delivering intensive life support away from a hospital intensive care unit.
‘Sadly, as the judge has now ruled, there is simply no way that Charlie, a patient with such severe and complex needs, can spend any significant time outside of an intensive care environment safely.
‘The risk of an unplanned and chaotic end to Charlie’s life is an unthinkable outcome and would rob his parents of precious last moments with him.
‘The priority of our medical staff has always been Charlie. Our thoughts and deepest sympathies go out to Chris and Connie.’