Born with mitochondrial depletion syndrome, a rare genetic condition that causes brain damage and progressive muscle weakness, Charlie Gard was described by the Great Ormond Street Hospital as a “terminally-ill child” who had lost his ability to see, hear, and make a noise, or even move.

The court took the side of the doctors – ruling that it would be cruel to extend Charlie’s life further – and has rejected an appeal for an experimental therapy in America.

High Court judge Justice Francis, who concluded life-support treatment should end, expressed that he had made the decision with the “heaviest of hearts”; but with “complete conviction” for Charlie’s best interest.

A spokesperson remarked, "Both the High Court and the Court of Appeal have decided that it is in Charlie's best interests for treatment to be withdrawn.”

"We have been asked to continue to provide treatment until the Supreme Court meets and we respect that wish."

A preliminary hearing was heard on 8 June, and the highest court ruled that Charlie’s life support must be switched off.

Three judges upheld the ruling


It was a tough decision that made Charlie’s parents, Connie and Chris, break down pleading with the court to save their son.

Clutching his son’s toy monkey, Chris told the court, “My son is the apple of my eye and I would do anything for him.”

The parents said Charlie is a “prisoner” in hospital and great Ormond Street’s treatment has been “inhuman”.

The distraught mother Connie screamed in tears, “How can they do this to us?” She vowed to “fight to the very end” and said her son “shouldn’t have to die.”

Earlier on 11 April, Charlie’s parents were told by the court that his life support machine could be turned off.

On 2 May, the couple hired lawyers and begged senior judges at the Court of Appeal for a second chance to save their son’s life. But three judges upheld the ruling on 25 May.

However, the court had ruled Charlie, who has been in intensive care in the hospital since October last year, could stay on life support for 24 hours pending review by the European Court of Human Rights.

Funds from fundraiser sufficient for treatment in US


Charlie Gard has barely reached his first year when he was diagnosed with end-stage mitochondrial DNA depletion syndrome, after both of his parents were unknowingly carrying the faulty gene.

Reported as one of only 16 people to ever have the condition, Charlie’s fight to survive amidst controversial ethical dilemmas has hit social media as funds totalling more than £1.3 million through an internet appeal have poured in to enable his parents to fly him to USA for nucleoside bypass therapy, a new treatment that is taken as an oral medication.

Charlie's rare disease has left him unable to cry and made him deaf. Photo credit: PA/BBC
Charlie's rare disease has left him unable to cry and made him deaf. Photo credit: PA/BBC

A spokesperson for Great Ormond Street Hospital said it was a "very sad day" for Charlie's parents and family – explaining that it is never easy when medical and judicial opinion goes against the wishes of the parents; but their first responsibility remains to put the interests of the child first and foremost.

“It is also hugely difficult for any clinically-trained professional to be asked to treat a child who has no chance of survival or even improvement in his quality of life,” the hospital added.

While the court read out its decision, friends of the family stood outside appealing, holding up Charlie’s pictures and chanting “save Charlie Gard” and "give him a chance".

Court said case was sad, but not exceptional


It was a heart-breaking scene to be rendered helpless in saving their own child and they want to take their case to the European Court of Human Rights.

Justice Lady Hale praised the parents’ devotion, adding that every parent would want to do the same. But she said as judges – and not as parents – they were concerned with the legal position and the proposed appeal.

Katie Gollop QC, leading Great Ormond Street's legal team, said the case was "sad" but not "exceptional".

She said the couple seemed to be suggesting that "parents always know best".

"Fundamentally, the parents don't accept the facts," she said. "They don't accept that nucleoside therapy will be futile."

She added Charlie’s condition affords him no benefit and he is on a machine, which causes his lungs to move up and down – because his lungs cannot go up and down.

Charlie’s parents have been told that their son can be kept on life support until Tuesday, while European judges review their case. MIMS

Read more:
5 rare medical conditions
Disease prestige: A case of hierarchy in medical conditions and specialities
Legalising euthanasia: The ongoing debate between doctors

Sources:
http://www.thenational.scot/news/15337484.Parents_of_Charlie_Gard_suffer_new_court_blow/
http://www.bbc.com/news/uk-england-40206045
https://www.thesun.co.uk/news/3248426/charlie-gard-latest-news-supreme-court-decision-life-support-parents-mitochondrial-depletion-syndrome/

http://www.bbc.com/news/uk-england-london-40103725