For Parents of Children Like Charlie Gard, Learning to ‘Redefine Hope’

Charlie, who was born with a rare mitochondrial disease that made him blind, deaf and unable to move on his own, died July 28, days before his first birthday; Daisy lived to be 12, racing around in a wheelchair with flashing lights, appreciating nail glitter and slapstick comedy. And while Charlie’s parents engaged in a painful and protracted legal battle to try to keep him alive, Daisy’s mother said she eventually realized her greatest achievement would be to give the girl a “good death.”


Sacha Langton-Gilks at her home in Dorset, England. She said that accepting that there was no cure was the hardest challenge for parents of incurably ill children.

Tom Jamieson for The New York Times

“I had a longer journey and I came to accept Daisy’s diagnoses,” Mrs. Nimmo said. “I sometimes disagreed with the doctors, but there was never a complete breakdown in communication as happened with the Gards.”

Experts say that cases like Charlie Gard’s are rare, and that most parents of chronically ill children and the doctors who treat them reach consensus about when and how to end treatment. Cafcass, an independent body that represents children in court cases in England, counted 18 instances last year of disputes between doctors and parents it was involved with that ended up in court.

Another dispute is emerging. A group calling itself Charlie’s Army has begun mobilizing on behalf of the family of a profoundly ill 14-month-old boy in Liverpool, Alfie Evans. Alfie, whose diagnosis remains unclear, has been in a coma since December, and his parents are fighting the hospital’s desire to take him off life support; as in the Gard case, several American hospitals have offered to help.

Alfie’s father, Thomas Evans, argues that Alfie has shown signs of improvement and that it is his parental duty to do everything possible to save his son’s life.

“We do not want to let him die when there could be something to help him,” he wrote on a crowdfunding site where he is raising money for his treatment.


Mrs. Langton-Gilks’s son David in 2010. David spent his final days at home.

Sacha Langton-Gilks

But Dominic Wilkinson, a neonatologist and professor of medical ethics at Oxford University, said that doctors and hospitals sometimes needed…

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