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Ethics – Charlie Gard dilemma

August 2017

The mother of a baby with a similar condition to Charlie Gard has urged his parents to never give up on their battle to save their son.

According to a report in the Evening Standard (11 July), Eman Muhammad, 33, was told her baby girl, Mira, had a rare genetic condition and would not survive. Sixteen months later, Ms Muhammad is preparing to bring her child home from the intensive care unit at Chelsea and Westminster Hospital.

According to the Evening Standard, Mira was born suffering a genetic mutation causing brain-lung-thyroid syndrome NKX2-1, which left her unable to breathe by herself, and her mother said she was told soon after birth that she would not survive.

Ms Muhammad said, ‘I had a professor who was the European expert in Mira’s condition sitting down in front of me telling me she wasn’t going to make it, that she was going to die. But I had this hope inside my heart’. She has been in touch with Charlie’s parents Chris Gard, 33, and Connie Yates, 31, online, as support for the parents grows internationally.

Charlie Gard, who has mitochondrial DNA depletion syndrome, has severe brain damage, which means he cannot open his eyes or move his arms or legs. He is unable to breathe unaided, which is why he is on a ventilator. Charlie’s heart, liver and kidneys are also affected. His doctors say it is not clear if he feels pain, according to reports.

In July, Charlie Gard’s parents were allowed to provide evidence why their son should receive experimental treatment called nucleoside therapy in America, offering a 10 per cent chance of improvement. His parents have raised more than £1.3m in funds to take him there.

Great Ormond Street Hospital, where Charlie is in intensive care, has (up to the time of writing) argued that Charlie’s life-support treatment should stop, since he has suffered ‘catastrophic’ and irreversible damage. The judge, who is due to stage further hearings on the legal battle surrounding this case, has said he will make his decision on 25 July.

Charlie Gard