Parents of Charlie Gard plead with judge not to take eight-month-old baby off life support

Rachel Middleton
Charlie Gard

The High Court had to halt proceedings after the mother of a sick eight-month old baby who wants to take him to a US hospital for treatment broke down during a hearing on whether he should be taken off a life support machine.

Justice Francis called for a break in the proceedings after Charlie Gard's mother, Connie Yates, broke down while hearing medical evidence about her son's condition.

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Doctors at the Great Ormond Street Hospital say that it is time to stop providing life support treatment to the little boy, advising he should be moved to a palliative care regime. They say Charlie receives 24-hour care and should be allowed to die with dignity, BBC reports.

Charlie, who was born on 4 August 2016, suffers from a rare genetic condition called mitochondrial depletion syndrome which causes progressive muscle weakness. He is believed to be one of only 16 sufferers from the disease.

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The Family Division of the High Court was told how the disease is usually fatal in the first year, although children can survive for longer on ventilators.

However, Charlie's parents, Yates and Chris Gard, disagree and want to take Charlie to a hospital in the US where they hope he will receive pioneering treatment. They have so far raised close to £1.3m for the treatment through a crowdfunding campaign, although it is still about £50,000 short of the total required.

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Yates told the judge: "I don't think he is suffering or I wouldn't be here. I don't see the rush to end it now." Admitting that the treatment in the US was "not a cure", she told the judge: "I promise you if he doesn't improve we will let him go," Sky News reported.

His father, Chris Gard, described Charlie as the apple of his eye and said that he would do anything to give him a chance. "It doesn't mean he should have to die because he will not be like another little boy running around," he said. The father had a monkey teddy bear in his suit jacket pocket throughout the hearing.

He insisted that as parents they believe Charlie "knows who we are" and can "sense who we are".

Gard added: "We firmly believe that Charlie was sent to us because we were the ones to look after him. We were the only ones to look after him."

He added: "We are not doing this because we can't bear to lose him ... we just want that chance for him to improve and have a better quality of live."

The doctor in America who has offered treatment for up to six months has made it clear that the nucleoside therapy he is offering is not a cure for the disease.

Doctors at Great Ormond Street Hospital say that although theoretically Charlie could be given the treatment in the UK, they do not believe this is appropriate because he is so ill.

Charlie no longer responsive, says specialist

At the hearing, an intensive care specialist said that Charlie was no longer responsive and that it was hard to be sure whether he was in pain: "The disease has affected his brain to the extent that he is completely ventilator-dependent."

On the treatment on offer, the specialist, who cannot be identified, said there is a small chance that it could work but said Charlie's life could not be made "tolerable".

"It is really hard to see how he could possibly benefit," the specialist said, adding that Charlie's illness is not just irreversible, it is progressive.

Victoria Butler-Cole, who represents Charlie's interests via a guardian, told the court that although Charlie's parents had held talks with doctors, the negotiations were not fruitful. She said Yates and Gard had been willing to "consider some middle ground" but were unable to reach an agreement with the hospital.

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