In a heartbreaking court case that began earlier this month, the fate of a sick 8-month-old boy was put on trial, with one lawyer arguing for little Charlie Gard’s parents to have the final say in their child’s life support and another fighting for the boy’s doctors to have the same. And on Tuesday, the ruling came in: High Court Justice Nicholas Francis deemed it acceptable for doctors to pull the plug on the sick baby, even if doing so is against the parents’ wishes, the BBC reports.
Charlie was born on August 4, 2016. At the time, he seemed to be perfectly healthy — but by the time he was 2 months old, his health was declining significantly. Doctors ultimately determined that he has mitochondrial depletion syndrome, a rare condition that affects the mitochondrial DNA (aka the part of human cells that provides our bodies with energy) and wreaks havoc on the brain, kidneys, and muscles.
So, for the majority of his life, Charlie has been treated at Great Ormand Street Hospital in London. There, his condition has grown worse and worse, and he has, unfortunately, become weaker and weaker. His doctors said that he was unable to move and had sustained “significant irreversible brain damage,” according to the BBC. So, in an effort to win the right to override the parents’ wishes to continue life support, the hospital set up an April 3 court date.
But Charlie’s parents, Chris Gard and Connie Yates, haven’t lost hope: In fact, through extensive research, they managed to find a doctor in the United States who would be willing to try an experimental oral treatment plan with Charlie. The treatment, known as nucleoside bypass therapy, has been successful for Arturito Estopiñan, an American child who has a different and less severe type of mitochondrial depletion syndrome.
Charlie’s parents hoped that, if they were able to raise the money, the therapy might give their son one more shot at a longer, happier, and healthier life. Since they began raising money via a GoFundMe page in early 2017, the couple has raised more than £1.2 million (more than $1.5 million) to help with Charlie’s treatment in America. Gard and Yates were ecstatic — but then came the court ruling.
As High Court Justice Nicholas Francis read out his final ruling on Tuesday — doctors at Great Ormand would be able to take Charlie off life support against his parents’ wishes, Gard screamed “No!” and Yates broke down in tears. According to the BBC, the devastated couple stormed out of the courtroom before the judge could even finish his statement. And yet Justice Francis said he gave his verdict with “complete conviction,” albeit the “heaviest of hearts.” He commended the parents for their valiant efforts to save their child, but ultimately believed any further attempts to keep the boy alive would not be in his best interest.
“I know this is the darkest day for Charlie’s parents,” he said in his statement. “My heart goes out to them. I only hope in time they will come to accept it is in Charlie’s best interests to let him slip away peacefully, and not put him through more pain and suffering.” Despite Justice Francis’ final verdict, Charlie’s story doesn’t necessarily end here. The parents’ lawyer, Laura Hobey-Hamsher, told the BBC that the couple’s legal team will study the ruling and launch an appeal before the three-week deadline, during which hospital officials have promised to keep Charlie on life support.
Only time will tell what will happen next for the 8-month-old and his family. In the end, though, Gard and Yates hope that Charlie will not only get a second chance at life, but that his case will also serve as inspiration for other parents of infants with rare diseases in the future. The parents wrote on Charlie’s GoFundMe page:
If Charlie receives this treatment and it does work like the doctor in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future who are born with this horrible disease, and it will open up other trials on other mitochondrial depletion syndromes.We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives… hopefully starting with Charlie.