(LONDON) — The family of 11-month-old Charlie Gard, whose illness has damaged his brain and rendered him unable to breathe on his own, asked a U.K. court today for permission to let the child die at home.
Charlie’s mother, Connie Yates, appeared in court alongside Grant Armstrong, a family lawyer, who explained the family’s last wishes for their son to a judge in Britain’s High Court.
During the session, the parents and hospital discussed hospice care versus home care. Though it appeared the hospital wanted to fulfill the parents’ wishes, some stumbling blocks may remain. Court was adjourned for the day and is expected to resume tomorrow.
The court appearance follows an emotional statement by Charlie’s parents Monday, in which they announced their decision to stop pursuing their request to take the baby to the United States for potential experimental treatments to prolong his life. An assessment in the U.K. from a U.S. doctor who specializes in mitochondrial depletion syndrome, the rare disease from which Charlie is suffering, said the boy was past the time when the treatments would help.
Yates stood beside her husband yesterday on the steps of the U.K. High Court as he gave a solemn address to the press about their decision to let Charlie die.
“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,” Chris Gard said during the public statement.
Gard said that it was no longer in his son’s best interest to seek treatment and that he and his wife have decided to let him “be with the angels.”
“Our son is an absolute warrior,” Gard said of his baby, attempting to hold back tears. “We will miss him terribly.”
The situation surrounding Charlie’s fate has drawn considerable international attention and passionate support for the parents’ wish to seek further treatment outside the public health system. Both President Trump and Pope Francis had expressed public support for the Gards in their quest to pursue an experimental treatment for Charlie.
Some of those heightened emotions spilled over into death threats for the staff at Great Ormond Street Hospital (GOSH), where Charlie has been treated. The hospital released a statement over the weekend saying some of their staff had received menacing messages, including death threats, in the wake of the case becoming an international story.
GOSH issued a statement, after the Gard family announced their decision yesterday, acknowledging the personal strain they faced throughout the public battle. The hospital also referred to the work Dr. Michio Hirano, the specialist in Charlie’s disorder and professor of neurology at the Columbia University Medical Center in New York, who was brought in to evaluate the child for possible experimental treatment.
“GOSH’s hope for Charlie and his parents was that that optimism would be confirmed,” GOSH said in the statement. “In the months ahead, all at GOSH will be giving careful thought to what they can learn from this bruising court case.”
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