07:30, May 23 326 0 theguardian.com

2017-05-23 07:30:04
Parents of sick baby say treatment outside UK is son's 'last hope' of survival

A couple who want to take their sick baby son abroad for treatment have asked three court of appeal judges not to take away their “only remaining hope” for his survival.

Chris Gard and Connie Yates want permission to take nine-month-old Charlie, who has a form of mitochondrial disease that causes brain damage and muscle problems, to the US for a therapy trial.

Last month, a high court judge ruled that doctors in Britain could stop providing life support treatment. Charlie’s parents hope that the three appeal judges will overturn Mr Justice Francis’s decision.

Lord Justice McFarlane, Lady Justice King and Lord Justice Sales are analysing evidence at a court of appeal hearing in London on Tuesday.

Richard Gordon QC, leading Charlie’s parents’ legal team, told the three judges that the case raised “very serious legal issues”.

“They wish to exhaust all possible options,” Gordon said in a written outline of Charlie’s parents’ case. “They don’t want to look back and think ‘what if?’. This court should not stand in the way of their only remaining hope.”

Lawyers representing Gard and Yates said Francis had not given enough weight to Charlie’s human right to life. They said there was no risk that the proposed therapy in the US would cause Charlie “significant harm”.

Francis decided that doctors could stop providing life support to nine-month-old Charlie on 11 April, after analysing the case in a hearing at the family division of the high court in London.

Gard and Yates, who are in their 30s and live in Bedfont, west London, want a specialist in America to provide therapy. Doctors at Great Ormond Street hospital, where he is being cared for, disagree and say life-support treatment should stop.

Francis ruled in Great Ormond Street’s favour and concluded that Charlie, who suffers from a rare genetic condition and has brain damage, should move to a palliative care regime.

Great Ormond Street bosses said treatment would continue until appeal judges had made their decision.

Francis heard that Charlie, who was born on 4 August, had a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage.

Specialists in the US have offered a therapy called nucleoside, but Francis said experts agreed that the treatment could not reverse Charlie’s structural brain damage.

Charlie’s parents have managed to raise £1.3m from an online fundraising page to cover the potential healthcare bill in the US.