30 Last hope for Charlie
Parents await do-or die decision
A COURT will rule next week on whether Charlie Gard, the little British boy breaking hearts across the world, gets one final chance at a better life.
The plight of the critically ill baby, who is being kept alive by ventilators in the Great Ormond St children’s hospital in London, has become a global cause célèbre, with everyone from Pope Francis to Donald Trump weighing in.
His distraught parents, Connie Yates, 31, and Chris Gard, 33, from west London, want to take him to the US for experimental treatment they hope could save him.
But doctors caring for him at Great Ormond St, the most respected children’s hospital in the world, say he is suffering, has irreversible brain damage, and that he should be allowed to die with dignity.
The case has been through the High Court, the Supreme Court, the Court of Appeal and the European Court for Human Rights, all of which ruled against the parents.
At the centre of the storm is little Charlie, a beautiful 11month-old baby who lies motionless in a hospital crib, his stuffed monkey by his side.
“If he’s still fighting, we’re still fighting,’’ Charlie’s mother, Ms Yates, said outside the court on Monday, when a petition with 350,000 signatures protesting the doctors’ decision was handed over.
“He’s our son, he’s our flesh and blood. We feel that it should be our right as parents to decide to give him a chance at life. There’s nothing to lose. He deserves a chance.’’
Born apparently healthy, he inherited a rare mitochondrial disease, which destroyed the cells of his organs and muscles.
His diagnosis is infantile onset encephalomyopathic mitochondrial DNA depletion syndrome. He is thought to be one of only 16 children in the world with the condition.
He now cannot eat, move, cry or breathe, and is being kept alive through intravenous nutrition and a ventilator.
After hearing about a highly experimental treatment in the US called nucleoside therapy, which involves a course of drugs taken orally, his parents launched a fundraiser to take him to the US, with the public contributing $2.1 million.
But doctors in London went to court to prevent his parents taking him overseas.
The High Court reopened the case after intense lobbying, and on Thursday heard new evidence via video link from a professor of neurology in New York, which called the previous judgment into question.
The professor, whose name is suppressed, gave evidence in April that he believed the brain damage was likely to be irreversible. But on Thursday he said there was a small but significant improvement in brain function.
He also confirmed he had spoken to the White House about the new evidence, a day after President Trump tweeted support for Charlie.
A ruling will be handed down on Charlie Gard next week.