Today, the parents of 11-month-old Charlie Gard, who suffers from a rare mitochondrial DNA depletion syndrome, gave up their legal fight to take him to the US for experimental treatment because Charlie’s “window of opportunity no longer exists.” Outside the court, Charlie’s father delivered a heart-wrenching address thanking Charlie’s supporters and telling Charlie good bye.
Charlie’s case has drawn worldwide attention with people around the globe chipping in to help his parents raise over $1.6 million to take him to the US for an experimental treatment. However, in June, the European Court of Human Rights refused to intervene, thereby upholding the British Supreme Court’s decision to grant doctors at Great Ormond Street Hospital in London permission to turn off Charlie’s life support. Charlie’s parents fought the decision, adamant in their decision to try the experimental treatment in the US. Doctors and lawyers in London prevented them from taking Charlie out of London, though, and now it is too late.
Last week, Dr. Michio Hirano from the Columbia University Medical Center and Dr. Enrico Silvio Bertini from the Vatican requested full brain and body scans done on Charlie. The results of the scans showed that too much time had been wasted in the legal battle. A statement was released to the public with this tragic news: “Sadly, following the body MRI the parents’ worst fears have been confirmed by their team of international experts that it is too late to treat Charlie.”
Today, Charlie’s parents, Chris Gard and Connie Yates, wept as their lawyer, Grant Armstrong, told those gathered at London’s High Court that the baby’s latest scans show it is now too late to try to treat him. “For Charlie, it is too late … treatment cannot offer a chance of success,” Armstrong announced Monday.
Outside the court, Gard and Yates addressed the crowd about their heartbreaking decision to let Charlie “go and be with the angels”:
This is one of the hardest things that we will ever have to say, and we are about to do the hardest thing that we’ll ever have to do ― which is to let our beautiful little Charlie go. Put simply, this about a sweet, gorgeous, innocent, little boy who was born with a rare disease, who had a real, genuine chance at life and a family who love him so very dearly and that’s why we fought so hard for him.
Gard expressed grief that his “poor boy has been left to just lie in hospital for months without any treatment while lengthy court battles have been fought.” He also blamed wasted time for Charlie’s deterioration saying, “Tragically, having had Charlie’s medical notes reviewed by independent experts, we now know, had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy, little boy.”
Gard then requested privacy while he and Yates spend their last precious moments with Charlie “who unfortunately won’t make his first birthday in just under two weeks time.” Fighting back tears, a choked up Gard finished by bidding his son farewell.
To Charlie we say ‘Mummy and Daddy love you so much. We always have and we always will and we are so sorry that we couldn’t save you. Sweet dreams baby. Sleep tight our beautiful little boy. We love you.
Charlie’s supporters around the world mourn this news. His parents did all they could, but in the end, time and power were not in their favor.
Charlie’s story is tragic because a little boy was essentially left to die when he could have been being treated. Charlie’s story is also terrifying because it displays the astronomical amount of power the State has to decide whose life is worth trying to save and whose is not. But, ultimately, Charlie’s story must not be forgotten.
Photo via GoFundMe