Parents given a month to prove sick baby can make ‘lifesaving’ £1m trip to US
Couple in court fight over doctors’ advice to end life support for infant suffering from ultra rare condition
By Hayley A COUPLE have been given a month to persuade a judge to let them take their seven-month-old son to the US for potentially life-saving treatment as they begin a battle against Great Ormond Street Hospital.
In what was described by the judge as “one of the saddest” cases to come before the courts, Connie Yates and Chris Gard are trying to raise £1.2 million for treatment while fighting doctors who have applied to withdraw life support on the grounds it is not in the boy’s “best interest”.
Charlie Gard has a condition so rare he is believed to be only the 16th person diagnosed, but US doctors have agreed to attempt radical treatment which they believe could save him. A judge will rule next month on whether Charlie should be kept alive and taken for treatment against the advice of his London doctors.
“It felt surreal, a nightmare,” Miss Yates, 31, told the Daily Mail. “It is terrifying and we feel sick that in just a month Charlie’s fate will be decided. But we are grateful that we have this month to save Charlie. We have already done a huge amount of research into his condition but we will be working round the clock.”
Charlie was born healthy in August but Miss Yates, a carer, noticed he was getting weaker. He was diagnosed with a genetic mitochondrial disease which saps energy from muscles and organs.
Doctors at a hospital in the US, which cannot be named for legal reasons, have agreed to attempt nucleoside therapy, to try and repair his DNA. The treatment has been successful in patients with other types of mitochondrial depletion. However, the family will need to raise £1.2 million for an air am- bulance to take him to the US and for treatment.
In the meantime, Great Ormond Street applied to the High Court for permission to withdraw treatment and to stop his parents taking him abroad.
Katie Gollop QC, acting for the hospital, said: “There is no dispute about the diagnosis, what is under discussion here is whether the treatment that is being considered by the family and has already been considered and not adopted by Great Ormond Street is a possibility at all and to what benefit.”
But his parents say he is being “sentenced to death” and their barrister Sophia Roper will argue he is “in much better shape than the hospital says”.
But Ms Gollop argued: “It isn’t straightforward in a case like this when you have a child in a condition he is in and he can’t cry and is deaf.”
Mr Justice Nick Francis said the judge at the hearing on April 3 would have to balance “the risk of pain and suffering to Charlie” against treatment in the US proving successful.
‘It felt surreal, a nightmare. It is terrifying and we feel sick that in just a month Charlie’s fate will be decided’