Charlie was born with a rare genetic condition that causes irreversible brain damage.
Charlie Gard – a terminally ill 11-month-old British boy who became the face of a worldwide debate over end-of-life rights – has died, according to local news reports.
The Guardian reported Charlie’s parents as saying Friday that their son had died, only a day after a judge approved a plan for the child to be moved to hospice and be disconnected from a ventilator.
His parents, Chris Gard and Connie Yates, fought for months in a heart-wrenching court case that weighed their rights to keep their son alive against the desire of doctors to let him die to spare him pain and suffering.
The bitter legal battle elicited sympathy and support from Pope Francis and President Donald Trump, with hospitals in Rome and New York offering to help the child. It came to an exhausting and emotional end once it became clear that an experimental medical treatment that Charlie’s parents wanted for their son was not viable.
Charlie’s parents conceded this week. Gard said after recent imaging tests, “We’ ve decided it is no longer in Charlie’s best interest to pursue treatment, and we will let our son go and be with the angels.”
“Had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy, ” Gard said. “We will have to live with the what-ifs that will haunt us for the rest of our lives.”
Charlie was born in August 2016 with mitochondrial DNA depletion syndrome, a rare genetic condition that causes irreversible brain damage. It took away his ability to see, hear, move or breathe on his own. Weeks after his birth, the child was struggling to hold up his head or gain weight. At 2 months old, he became lethargic, and his breathing had become shallow, according to court records.
He was taken to Great Ormond Street Hospital in London, where he remained until a judge decided Thursday that he would be moved to hospice and removed from a ventilator. Earlier this year, doctors at the hospital concluded that nothing more could be done for him.
British courts decided Charlie should be allowed to die after a heartbreaking legal battle in which doctors asserted that the child had no chance of survival and Charlie’s parents argued there was an experimental treatment in the United States they had not tried. The case went all the way to the European Court of Human Rights, which declined to hear it, upholding previous court rulings that it was in Charlie’s best interest to withdraw life support.
The case was thrust into an international spotlight in June as the Vatican’s children’s hospital offered to admit Charlie, and the pope said on Twitter that “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
Then Trump said on Twitter that the United States “would be delighted to” help. Charlie’s parents said the support had given them renewed hope.
Great Ormond Street Hospital has maintained that the treatment sought by Charlie’s parents had never been used on either a human or animal with Charlie’s condition, and that by the time it was proposed, Charlie had suffered irreversible brain damage.
Earlier this month, England’s High Court gave Charlie’s parents another opportunity to present evidence about the experimental treatment.
Through it all, Charlie’s parents and the hospital had been at odds about whether the child was in pain.
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