Charlie Gard, the 11-month-old British infant with a debilitating genetic condition, has died. His mother and father, Connie Yates and Chris Gard, had fought a lengthy and painful legal battle to save their child’s life. They announced the sad news of his death on Friday, July 28.
Charlie, who was just one week away from his first birthday when he died, suffered from a genetic condition called mitochondrial DNA depletion syndrome. He was only the 16th person in history to be diagnosed with the rare disease, which causes muscle weakness and a loss of motor skills. Charlie’s case was so severe that he was unable to move or even to breathe without assistance. There are currently no cures for mitochondrial DNA depletion syndrome.
In February, Charlie’s physicians at Great Ormond Street Hospital in London made the decision that the boy would not recover and recommended he be removed from all life support. This directly contradicted Charlie’s parents’ desires, but in April the UK High Court ruled in favor of the hospital. In June, the European Court of Human Rights and the British Supreme Court upheld the decision.
Connie and Chris began a new legal effort to bring Charlie to the United States for an experimental treatment they hoped might help the baby, despite the fact that doctors said the treatment would probably do more harm than good.
A GoFundMe campaign established by Charlie’s family to bring him to the United States raised more than $1.7 million but the courts and medical community did not budge on their decision. The world became engrossed with the case as time ran out on Charlie. A representative for Pope Francis issued a statement supporting the parents, which read: “He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”
U.S. President Donald Trump also weighed in on the desperate case, tweeting that he would “be delighted” to provide assistance to the family in their efforts to treat Charlie.
But on July 24, Charlie’s family withdrew the case after a physician had determined that the boy’s condition had progressed to the point that he was no longer eligible for the experimental treatment. On the 27th, the courts sided with the hospital and demanded that Charlie be moved to a hospice facility. The parents had wished to care for their baby at home in his final days.
In their statement following the court’s hospice decision, Connie and Chris said: “Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you. We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight, our beautiful little boy.”
Charlie died the following day. “Our beautiful little boy has gone, we are so proud of you Charlie,” read a social media post from his parents in their painful announcement.