Tolga Akmen/Getty Images(LONDON) — Terminally ill British infant Charlie Gard, whose parents’ fight for his life drew worldwide attention, has died, according to a family spokesperson.
Alison Smith-Squire, a spokeswoman for Charlie’s family, said in a statement to ABC News on Friday: “The boy who touched the world has passed away today. [Charlie’s mother] Connie [Yates] said: ‘Our beautiful little boy has gone, we’re so proud of him.'”
After a long and emotional legal battle, Britain’s High Court decided Thursday that Charlie should be moved from a hospital to a hospice, where the 11-month-old would be taken off life support and “inevitably” die.
Judge Nicholas Francis issued the order after Charlie’s parents and the hospital treating him failed to meet a deadline set by the court to agree on an end-of-life plan that could have kept the incurably ill baby alive for a few more days. The judge ruled that Charlie, whose rare illness damaged his brain and rendered him unable to breathe on his own, would then be transferred to a hospice by the hospital medical team and have his ventilator removed.
The exact timeline of these events and the location of the hospice were kept private by court order.
Great Ormond Street Hospital in London, which was treating Charlie, released a statement Thursday, saying the case has been “a uniquely painful and distressing process for all concerned,” and that it regrets it “had to be played out in court over such a protracted period.”
“As the judge has now ruled, we will arrange for Charlie to be transferred to a specialist children’s hospice, whose remarkable and compassionate staff will support his family at this impossible time,” the hospital said Thursday. “Every single one of us wishes there could have been a less tragic outcome.”
In court Wednesday, both Charlie’s parents and his physicians at Great Ormond Street Hospital agreed that the child should spend his last days in a hospice rather than die at home or in the hospital. But they disagreed over the details on how Charlie would spend the last hours of his life.
Charlie’s family had hoped to assemble a medical team who could move him from Great Ormond Street Hospital to a hospice and supervise the intensive care the infant required so they could spend several days with their son before taking him off life support. But the doctor who had contacted the family offering to help lacked the proper qualifications. The unnamed doctor was a general practitioner with no intensive care experience and no medical team.
The judge then gave Charlie’s parents until Thursday to reach an agreement with the hospital if they could not provide a qualified doctor and team.
Yates, Charlie’s mother, delivered an emotional statement in court Monday, announcing the reasons behind her and dad Chris Gard’s decision to stop pushing to take their son to the United States for potential experimental treatments to prolong his life. Gard read a similar message outside court.
“This is one of the hardest things we’ve ever had to say and we are about to do one of the hardest things we’ve ever had to do,” he told reporters Monday, reading from a sheet of paper.
Gard said that it was no longer in his son’s best interest to seek treatment, and that they had decided to let him go and “be with the angels.”
“Our son is an absolute warrior,” Gard said of his baby. “We will miss him terribly.”
An assessment in the United Kingdom from an American doctor who specializes in mitochondrial depletion syndrome, the rare disease from which Charlie suffered, said the baby’s condition would not have been improved by the treatments.
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