WITH EYES WIDE OPEN
FAMILY BATTLES U.K. COURTS FOR RIGHT TO SELF-DETERMINE DESPERATELY ILL SON’S FATE
On Sunday, Connie Yates posted an emotional photograph of her 10- month- old son lying in a London hospital bed with his eyes open.
“A picture speaks a thousand words,” she said on Facebook.
For Yates it was proof that her son, Charlie Gard, deserves a chance to live. It was also a rebuke to the medical establishment who had convinced judges he should be taken off life support. Part of the medical evidence given to judges was that Charlie, who suffers from a rare genetic condition, was “not able to open his eyes enough to be able to see.”
“Indeed, this leads to the difficulty that his brain is failing to learn to see,” said doctors.
Yates believes her picture shows otherwise.
Charlie is at the centre of a court battle that pits his parents against the British state. Yates, and Chris Gard, the baby’s father, want to take their seriously ill son to the U. S. for experimental treatment they hope will provide a cure.
But three British court hearings — right up to the Supreme Court — have ruled that Charlie should be allowed to “die with dignity” and be taken off life support.
Lawyers for the couple have argued that the courts are standing in the way of the parents’ — and Charlie’s — final hope and that the state is overriding the wishes of the parents.
In a final effort to keep their son alive, the parents have appealed to the European Court of Human Rights. Judges there have ordered doctors to keep Charlie on life support until at least midnight Tues- day so they can study the paperwork in the case.
The legal battle began in April at the High Court in Britain. Doctors at Great Ormond Street children’s hospital said Charlie was suffering from a rare form of mitochondrial DNA depletion syndrome, meaning his muscles were progressively weakening. He had also suffered brain damage.
At the High Court hearing, Justice Nicholas Francis said, “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doctors at Great Ormond Street are agreed that Charlie has reached the stage where artificial ventilation should be withdrawn, that he should be given palliative care only and that he should be allowed to die peacefully and with dignity.
“Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer.”
He added that he made the decision with the “heaviest of hearts” but with “complete conviction” for Charlie’s best interests.
The case went to the appeal court where Richard Gordon, who led Charlie’s parents’ legal team, told 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.”
Gordon suggested that Charlie might be being unlawfully detained and denied his right to liberty.
He said judges should not interfere with parents’ exercise of parental rights and added: “What is really at stake in this case is the state, on a massive scale, intruding in your right to private and family life.”
Lawyers, who represented Charlie’s parents for free, said Justice Francis had not given enough weight to Charlie’s human right to life.
The parents have raised 1.3 million pounds ( US$ 2.2 million) in their hope of taking Charlie to the U.S. for an experimental procedure. Their lawyers said there was no risk that the proposed therapy in the U. S. would cause Charlie “significant harm.”
The family lost on appeal and last week the case went to the Supreme Court. When judges there also ordered Charlie to be taken off life support Yates broke out in screams.
The couple then appealed to the European court.
A spokesman for the court said last week, “The European Court of Human Rights decided to indicate to the United Kingdom Government that, in the interests of the parties and the proper conduct of the proceedings before it, they should provide Charlie Gard with such treatment and nursing care as may be appropriate to ensure that he suffers the least distress and retains the greatest dignity consistent, insofar as possible, with maintaining life, until midnight on Tuesday.
“The interim measure granted ... has been applied temporarily in order to allow the European Court to examine the request.”
If the parents lose at the European court, Tuesday could be Charlie’s last day.