
London, July 28 (AP): Charlie Gard, the critically ill British baby at the centre of a contentious legal battle that attracted the attention of Pope Francis and President Donald Trump, died today, according to a family spokeswoman. He would have turned one next week.
Charlie suffered from a rare genetic disease, mitochondrial depletion syndrome, which caused brain damage and left him unable to breathe unaided.
His parents, Chris Gard and Connie Yates, raised more than £1.3 million to take him to the US for an experimental medical therapy they believed could prolong his life. But Charlie's doctors at the Great Ormond Street Hospital in London objected, saying the treatment wouldn't help and might cause him to suffer. The dispute ended up in court.
Charlie's case became a flashpoint for debates on the rights of both children and parents, on health-care funding, medical interventions, the responsibilities of hospitals and medical workers and the role of the state.
Alison Smith-Squire, a family spokeswoman, confirmed that Charlie died today but no further details were released. In a statement, Yates was quoted as saying "our beautiful little boy has gone, we're so proud of him."
After months of legal battles, High Court Judge Nicholas Francis ruled yesterday that Charlie should be transferred to a hospice and taken off life support after his parents and the hospital that had been treating him failed to agree on an end-of-life care plan for the infant.
Under British law, it is common for courts to intervene when parents and doctors disagree on the treatment of a child. In such cases, the rights of the child take primacy over the parents' right to decide what's best for their offspring. The principle applies even in cases where parents have an alternative point of view, such as when religious beliefs prohibit blood transfusions.
The case made it all the way to Britain's Supreme Court as Charlie's parents refused to accept decisions by a series of judges who backed Great Ormond Street. But the Supreme Court agreed with the lower courts, saying it was in Charlie's best interests that he be allowed to die.
His parents gave up their fight on Monday after scans showed that Charlie's muscles had deteriorated so much that the damage was irreversible.
"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," his parents wrote when they announced their decision. We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight, our beautiful little boy."