It appears that the battle to save Charlie Gard’s life has come to an end. Today was the final day in a hearing that would appeal court decisions barring Charlie’s parents from taking him to the United States for experimental treatment, which they believed could help his condition. In a shocking turn of events, the lawyer representing Chris Gard and Connie Yates announced that they were withdrawing their appeal instead.
Charlie was originally placed on life support after he became seriously ill. He was then diagnosed with a rare RRM2B mitochondrial depletion syndrome. Initially, his parents wanted to take him to the United States for an experimental nucleoside therapy treatment, which they believed could save his life. They raised over $1.4 million for his treatment, but Charlie’s hospital – Great Ormond Street Hospital in London – disagreed that the therapy would be beneficial and insisted that Charlie should instead be taken off of life support. The decision sparked a months-long legal battle, with Charlie’s parents losing appeal after appeal, until the European Court of Human Appeals ultimately ruled against them.
The case garnered international attention. A Vatican hospital offered to take in Charlie for treatment, President Trump offered to help baby Charlie, and United States lawmakers introduced a bill to make Charlie and his parents U.S. citizens. However, the hospital and the courts initially held firm and refused to allow Charlie to be treated elsewhere. The hospital also refused to let his parents take him home to die.
As the controversy grew, Great Ormond Street Hospital eventually requested a new court hearing so new evidence could be considered. An American doctor, Dr. Michio Hirano, traveled to London to examine Charlie and to meet with specialists. Dr. Hirano was optimistic that the nucleoside therapy could help Charlie, saying British doctors could be wrong in their diagnosis. Instead, Dr. Hirano said, Charlie could be suffering from muscle weakness, and if this is the case, there is up to a 55 percent chance of therapy helping him.
Given the optimism from Dr. Hirano, the decision from Charlie’s parents to withdraw their appeal to seek experimental treatment is shocking. However, according to their lawyer, it is an issue of time “running out” for Charlie. The lawyer said Charlie’s parents were “distressed” by the results of the latest tests, explaining, “For Charlie, it is too late, the damage has been done… it is no longer in Charlie’s best interests to pursue treatment.” They now instead want to spend what little time Charlie has left with him.
Gard and Yates also don’t appear to be mincing any words about who is responsible for this turn of events. Armstrong said the delay in getting Charlie treatment has robbed him of the opportunity to have the nucleoside therapy. “Dark days lie ahead for these parents,” Armstrong said. “The parents wish to treasure their remaining time with Charlie, however short that may be.”
Yates took the stand herself, saying, “This is the hardest thing we’ve ever had to do. Following [the] most recent MRI scan, we’ve decided to let our son go.”
“He is not brain dead,” she continued. “A whole lot of time has been wasted. Charlie’s quality of life could have been improved greatly (by earlier treatment). But the delay in seeking treatment has brought Charlie to ‘the point of no return.’ Our poor boy has just been left to lie there for months without treatment… left with this illness to deteriorate to point of no return,” she said. “But no organ has failed. No proof he is in pain or suffering. The prospect of improvement now [is] too low. The deterioration in his muscles means there is no way back. Treatment is now not in Charlie’s best interests and we will let our little boy go.”
As she spoke, Chris Gard cried openly.
Yates also argued that it was not too late to prevent such a tragedy from afflicting another family. “It’s not too late for others. We owe it to him [Charlie] to not let his life be in vain,” she said. “We thank GOSH. We love Charlie very much. Our son is a warrior. His legacy will never die. His spirit will live on for eternity. Mummy and Daddy love you so much, Charlie. We always have, we always will.”
While it is not yet clear when – or if – Charlie will be taken off of life support, this is a tragic end for the Gard family.