Charlie Gard's mom pleads for baby boy to die at home

Kelley Robertson
July 26, 2017

The parents of "Little Charlie", who has a rare degenerative disease, have fought court battles for seven months hoping to defeat London's Great Ormond Street Hospital's refusal to let them take their baby to the US for other treatment.

But Katie Gollop, the lawyer representing the hospital, said Great Ormond Street would fulfil the wishes of Charlie's parents "if practical" and that his life support could not be provided at home.

Charlie Gard, aged 11 months, is believed to suffer from a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness.

"Charlie's parents Chris Gard and Connie Yates announced on Monday they were giving up their five-month legal battle for their son to receive the nucleoside treatment from Hirano in the U.S., for which they raised over 1.3 million pounds in donations".

They accused Great Ormond Street Hospital (GOSH) of putting "obstacles" in the way of Charlie's return home.

"Understandably, the parents wish to spend the maximum amount of time they have left with Charlie from now own", their lawyer, Grant Armstrong, said Monday.

His parents have given up fighting to take him to the USA for experimental therapy after British doctors said it wouldn't help.

Charlie's case touched off a bioethical debate that has drawn the attention of Pope Francis and President Trump.

Gard's parents are now seeking court permission to bring him home from the hospital to die peacefully.

Charlie's parents have long expressed the desire to be allowed to put him on hospice and take him home to die.

Mr Armstrong said representatives for GOSH had not visited the family home.

So far as GOSH is aware, invasive ventilation is only provided in a hospital setting. The experts recommended taking him off life support. Charlie's parents have made a decision to stop fighting.

Great Ormond Street Hospital officials say the baby must be kept safe and free of excessive pain and allowed to die with dignity. "There's one simple reason for Charlie's muscular deterioration [and] that was time", noting the lengthy decisions from the courts of London which restricted Charlie from the US treatment. Doctors at Great Ormond Street opposed that, saying it would not help and could cause Charlie more suffering.

However, the hospital later agreed to consider new evidence involving Charlie's condition before taking him off the ventilator.

"Emotions are as high in this case as they could be in any", said the presiding judge, Nicholas Francis.

USA -based activists flew to London to support Charlie's parents, and the case became a flashpoint for opposing views on health-care funding, medical intervention, the role of the state and the rights of the child.

The parents have had to face the reality, nearly impossible to contemplate; that Charlie is beyond any help even from experimental treatment and that it is in his best interests for him to be allowed to die. After exhausting treatment options in London, a judge ruled that taking Charlie to the US for an untested experimental treatment would do more harm than good.

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