Charlie Gard's parents’ new fight: for the right to take their baby home to die

By Nombulelo Manyana
25 July 2017

“Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.”

Charlie Gard’s parents are back in court.

But instead of fighting to be allowed to take their infant son to New York for an experimental treatment, they just want to be able to take him home.

Little Charlie’s life support will be switched off in the coming days after his parents decided to drop a court battle for the right to take him to the US for experimental therapy.

Chris Gard and Connie Yates, from the UK, said they would be giving up the fight to get their critically ill baby to New York because they believe it’s now too late for the nucleoside therapy to work.

Chris said it meant his "sweet, gorgeous, innocent little boy" will not live to see his first birthday on 4 August.

Charlie has encephalomyopathic mitochondrial DNA depletion syndrome, a rare genetic condition he inherited from his parents. This means he has brain damage and cannot move his arms or legs.

After a five-month court battle, the parent's lawyer stunned the court on Monday at the emotional hearing.

“Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy,” said Connie.

“The last 11 nearly 12 months have been the best, the worst and ultimately life changing months of our lives, but Charlie is Charlie and we wouldn’t change him for the world. All our efforts have been for him.

“We are about to do the hardest thing that we’ll ever have to do which is to let our beautiful little Charlie go.”

Now the parents’ legal battle has taken another turn.

Grant Armstrong, who represents Chris and Connie, said the case was returning to court for the “most difficult emotional part ... [the] circumstances in which Charlie’s passing will be conducted. The parents’ last wish is to take Charlie home.

“We struggle with the difficulties the hospital has placed in the way of the parents’ wish to have a period of time, probably a relatively short period of time ... before the final act in Charlie’s short life,” he said.

Katie Gollop, the lawyer representing Great Ormond Street Hospital (GOSH) where Charlie has been treated since October, said the Gard’s wish would be granted “if it is practical, possible and safe, and in Charlie’s interests so that he comes to no harm”.

According to The Guardian, the parents had been told by a Professor Michio Hirano, a New York neurologist who has pioneered an experimental therapy for children with a similar condition to Charlie, that there had been a chance of helping their son.

Charlie’s father Chris bid an emotional farewell to Charlie at Monday’s hearing.

“Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you but we weren’t allowed to. Sweet dreams baby. Sleep tight our beautiful little boy.”

Sources: BBC. The Guardian. Telegraph.

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