Charlie Gard, the terminally ill British baby at the center of a legal and ethical battle that attracted the attention of Pope Francis and U.S. President Donald Trump, died Friday. He was one week shy of his first birthday.
Charlie suffered from a rare genetic disease, mitochondrial depletion syndrome, which left him brain damaged and unable to move his limbs or breathe unaided.
A family spokeswoman, Alison Smith-Squire, confirmed Charlie’s death on Friday, a day after a judge ordered that he be taken to a hospice for his final hours.
“Our beautiful little boy has gone, we’re so proud of him,” his mother Connie Yates said in a statement.
Charlie’s parents raised more than $1.7 million to take him to the United States for an experimental medical therapy they believed could prolong his life. But Charlie’s doctors at 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.
After months of legal battles, High Court judge Nicholas Francis ruled Thursday that Charlie should be transferred to a hospice and taken off life support after his parents and the hospital 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.
Offers of help for Charlie came from Dr. Michio Hirano, a neurology expert at New York’s Columbia Medical Center and from the Vatican’s Babino Gesu pediatric hospital. Both said an experimental treatment known as nucleoside therapy had a chance of helping Charlie.
Great Ormond Street Hospital disagreed. It said the proposed treatment had never been tried on a human with Charlie’s condition.