‘TIME HAS RUN OUT’
PARENTS OF TERMINALLY ILL INFANT END LEGAL BATTLE TO KEEP HIM ALIVE
Her son, says Connie Yates, “has touched more people in his 11 months than most people do in a lifetime.” With tears streaming down her cheeks, Yates, the mother of terminally ill infant Charlie Gard, on Monday read a statement to a British court after it was announced that she and her husband, Chris Gard, were ending their highly publicized bid to keep their son alive.
“Our son is an absolute warrior and we will miss him terribly. One little boy has brought the world together,” Yates said.
“His body, heart and soul may soon be gone but his spirit will live on indefinitely and he will make a difference for years to come.”
Both parents wept in the packed courtroom at the High Court in London as their lawyer, Grant Armstrong, announced the end to their five-month legal battle.
With breaking voice, Armstrong said the couple was withdrawing their bid to have Charlie sent to the United States, where a doctor had offered to try to treat his rare genetic condition. The decision came after new medical tests showed the 11- monthold, who has brain damage and cannot breathe unaided, had irreversible muscular damage.
“This case is now about time,” Armstrong said. “Sadly, time has run out.”
Gard and Yates, who are in their 30s and from London, have fought ferociously for their son, who was born in August 2016 with mitochondrial depletion syndrome, a rare genetic disease.
The baby has been treated at Great Ormond Street Hospital in London, one of the world’s leading children’s hospitals. Doctors there say Charlie is in pain and further treatment would only increase his suffering. They had permission from the courts to switch off his life support and allow him to die peacefully. But his parents resisted, arguing that an experimental treatment could extend and improve Charlie’s life.
The case gained international attention after Charlie’s parents received support from Pope Francis, President Donald Trump and some members of the U. S. Congress.
Passions have often run high, with activists demanding “justice for Charlie” rallying outside the High Court and the hospital. Over the weekend, the hospital said it had contacted police after staff received abuse and threats.
Charlie’s parents condemned t he abuse, and on Monday thanked the hospital for the care it had given their child.
Judge Nicholas Francis criticized those “who know almost nothing about this case but who feel entitled to express opinions.”
At its heart, the case pitted the right of parents to decide what’s best for their children against the authorities’ responsibility to uphold the rights of people who can’t speak for themselves.
Under British law, children have rights independent of their parents, and it is usual for courts to intervene when parents and doctors disagree on the treatment of a child.
British courts and the European Court of Human Rights all ruled against Charlie’s parents and in favour of Great Ormond Street. The case returned to court this month when the hospital asked the judge to reassess the possible benefits of a treatment pioneered by Dr. Michio Hirano, a neurology expert from Columbia Medical Center in New York.
At a hearing earlier this month, Hirano said there was a 10- percent chance of a significant improvement in Charlie’s muscle use with the treatment, known as nucleoside therapy. But he conceded it had never been tried on a human with Charlie’s exact condition and no tests had ever been done on mice to see whether it would work on a patient like Charlie.
Hirano went to London last week to examine Charlie along with other experts. After seeing the results of new tests, the baby’s parents agreed to drop their case, meaning Charlie’s life support can now be removed.
But they still believe Charlie could have been saved had months not been spent in legal wrangling about whether he should get treatment.
“Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy,” Yates told the court.
The hospital disagreed. Its lawyer, Katie Gollop, said Charlie had suffered “irreversible neurological damage” and the treatment would have been “futile.”
Outside court, Chris Gard said Charlie “won’t make his first birthday in just under two weeks’ time. We are about to do the hardest thing that we will ever have to do, which is to let our beautiful little Charlie go,” he said.
The Vatican said Pope Francis was praying for Charlie and his parents, and urged the faithful to join him in prayer so that the baby’s parents “may find God’s consolation and love.
“Mum and dad l ove you so much. We always have and always will and we say sorry we didn’t save you. We had a chance and we were not allowed. Sleep tight baby boy Charlie Matthew William Gard. Our little hero. Thank you.”