08:16, June 08 370 0 theguardian.com

2017-06-08 08:16:03
Charlie Gard case goes to emergency supreme court hearing

The parents of a severely ill baby boy are taking their legal battle to an emergency hearing at the supreme court in the hope of persuading judges that he should be kept alive so they can take him to the US for treatment.

Chris Gard and Connie Yates want their 10-month-old son, Charlie Gard, who has a rare genetic condition, to receive experimental medical treatment which they hope may save his life.

Both the high court and the court of appeal have already ruled that life support treatment at Great Ormond Street children’s hospital, in London, should be stopped, and that Charlie should be allowed to “die with dignity”.

The hastily arranged hearing at the supreme court on Thursday afternoon will involve a panel of three justices: Lady Hale, the deputy president of the supreme court; Lord Kerr and Lord Wilson. They will decide whether to grant permission for a fuller hearing at a later date.

Gard and Yates, who are in their 30s and live in Bedfont, west London, have launched a fundraising appeal to help pay for doctors’ bills in the US. It reached a £1.2m target before the high court trial. That figure has now topped £1.3m and more than 83,000 people have made donations.

The couple have said they may appeal to the European court of guman rights in Strasbourg if they lose at the supreme court.

Great Ormond Street doctors are continuing to provide life-sustaining treatment pending a decision by the supreme court.

Charlie, who was born on 4 August last year, has a form of mitochondrial disease, a condition which causes progressive muscle weakness and brain damage. Specialists in the US are offering a therapy called nucleoside.

The courts have heard that Charlie can only breathe through a ventilator and is fed through a tube. In the family division of the high court Mr Justice Francis said he had made his decision with the “heaviest of hearts” but with “complete conviction” for Charlie’s best interests.

“All of Charlie’s treating doctors at Great Ormond Street are agreed that Charlie has reached the stage where artificial ventilation should be withdrawn, that he should be given palliative care only and that he should be allowed to die peacefully and with dignity,” the judge said. “Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer.”

Experts in Spain had also considered Charlie’s case and reached the same conclusion.

At an earlier hearing Katie Gollop QC, who led Great Ormond Street’s legal team, said therapy proposed in the US was experimental and would not help Charlie. “There is significant harm if what the parents want for Charlie comes into effect,” she told appeal court judges.

A guardian appointed to independently represent Charlie’s interests said doctors should stop life-support treatment. Victoria Butler-Cole, a barrister who was instructed by Charlie’s guardian, had told the high court judge that the boy should not travel to the US for a therapy trial.

She said life-support treatment would not benefit Charlie but prolong the process of dying. “This is not pioneering or life-sustaining treatment but a purely experimental process with no real prospect of improving Charlie’s condition or quality of life.”

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