.- A spokesperson for the parents of terminally ill British infant Charlie Gard has reported that their “beautiful boy” has died.
He had been taken into hospice care on July 27, a day before the announcement of his death. In a statement, his mother said: “Our beautiful little boy has gone, we are so proud of you Charlie.”
Gard, 11 months old, and his parents, Connie Yates and Chris Gard, had been at the center of a months-long legal debate regarding parental rights and human life. They had been denied the chance to take him to the U.S. for experimental treatment as well as their wish to spend a week with him in hospice care at home.
The case garnered international attention and support, with President Donald Trump and Pope Francis both weighing in via twitter in support of the boy and his parents this month. The pediatric hospital Bambino Gesù in Rome, known as “the pope’s hospital,” offered to care for the boy.
The parents had raised £1.35 million for treatment.
He suffered from a rare mitochondrial disease which paralyzes muscles and causes brain damage. He was believed to be only one of 16 sufferers in the world.
Born on August 4 of last year, Gard’s condition was discovered in October and he was admitted to the Great Ormund Street Hospital (GOSH). His life support was recommended to be withdrawn in April, and his parents subsequently took the case all the way to the European Court of Human Rights. All courts which reviewed the case upheld the GOSH doctors’ decision.
On July 17, Charlie was examined by US neurologist who claimed an experimental therapy could provide up to a 10% of improvement in the child’s condition. This came after unpublished research suggested there was a chance for some reversal in Charlie’s brain damage. The child and his parents were subsequently granted U.S. residency.
However, after new medical reports were revealed in court last week, Yates and Gard conceded that Charlie no longer has a chance for improvement, and on Monday withdrew their legal fight.
The child suffered from permanent brain damage and could not breathe on his own. His mother had expressed hope that he can spend a week in hospice before life support was withdrawn. That wish was not granted, as his parents could not assemble the team of doctors required.