Two weeks before what would be his first birthday, the parents of Charlie Gard in the UK have made the decision to end the legal battle to save his life.
Chris Gard and Connie Yates have been fighting for permission to let Charlie undergo treatment in the US, as the boy suffers a rare and fatal mitochondrial disease that leads to brain damage and immobility.
But the doctors treating Charlie in the UK labelled the US treatment “experimental” and said it would lead to further suffering if they were to transport Charlie between countries.
Though the couple took the case to the courts, and then to the European Court of Human Rights, their appeals were denied, with the Court of Human Rights declaring the case “inadmissable” at the end of last month.
Now, in a statement delivered to press outside the UK High Court, Chris Gard has said “too much time has been wasted” and that the latest MRI and EEG scans show Charlie’s illness has deteriorated “to the point of no return.”
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“There is one simple reason why treatment cannot now go ahead: We are now in July and our poor boy has been left to lie in hospital for months without any treatment while lengthy court battles have been fought,” Chris Gard told reporters yesterday. “Had Charlie been given the treatment sooner he would have had the potential to be a normal healthy little boy.”
Charlie’s father went onto say that scans earlier in the year showed Charlie was in relatively good condition.
“Despite his condition in January, Charlie’s muscles were in pretty good shape and he was far from showing catastrophic irreversible structural brain damage. Charlie’s been left with his illness to deteriorate, devastatingly, to the point of no return.”
Charlie is thought to be one of just 16 children in the world with mitochondrial depletion syndrome.
Though he was born healthy, he showed signs of the disease at eight weeks and has been in the hospital, unable to breathe unassisted, ever since. According to their website Charlie’s Fight, his parents are campaigning not only to save his life but to improve the lives of others affected by the disease as well.
“If Charlie receives this treatment and it does work like the doctor in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future who are born with this horrible disease,” the website reads. “It will open up other trials on other mitochondrial depletion syndromes.”
However, the European Court of Human Rights agreed with the British courts that the US treatment would expose Charlie “to continued pain, suffering and distress.”
Great Ormond Street Hospital released a statement outlining their “disappointment” that the US doctor who claimed last-minute he could give Charlie a chance of survival had not visited the hospital to examine Charlie, read his medical notes or viewed his brain scans.
The hospital added that De Michie Hirano had a “financial interest” in the drugs he was recommending.
Chris Gard said he and his wife would “have to live with ‘what ifs’ for the rest of their lives.
“Our son is an absolute warrior. His body heart and soul may soon be gone but his spirit will live on for eternity and it will make a difference to people’s lives for years to come. We will make sure of that,” he said.
The father went on to say they are preparing to turn off Charlie’s life support and asked the press for privacy—in what has been a very public case—during such a difficult time.
“We are now going to spend our last precious moments with our son Charlie, who unfortunately won’t make his first birthday in just under two weeks,” he said. “To Charlie, we say from Mummy and Daddy we love you so much. We always have and we always will and we are so sorry we couldn’t save you.”
What to do for a parent with a child in hospital.