WASHINGTON – –A week before his first birthday, 11-month-old Charlie Gard has died.
Charlie, born Aug. 4, 2016, suffered from a rare form of mitochondrial disease, a condition that causes brain damage and progressive muscle weakness.
As a result, he spent the majority of his short life in the hospital.
After a grueling months-long battle waged by his parents, judges denied Connie Yates and Chris Gard the opportunity to take their critically ill baby to the U.S. for treatment.
“Our beautiful little boy has gone, we are so proud of you Charlie,” his mother Connie said of her son’s passing.
The baby’s troubling predicament created international uproar and drew hundreds of supporters and incited debate over whether the government should have imposed “death with dignity” over a family’s wish to seek out experimental medication for their sick child.
Hundreds of Gard’s supporters who call themselves “Charlie’s Army” had raised approximately $1,773,090 on an online fundraising site to help ensure he receive adequate treatment.
In the end, though, the British government and courts refused his parents permission to seek help.
On July 3, President Trump stepped in to defend the British infant.
If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.
— Donald J. Trump (@realDonaldTrump) July 3, 2017
The Gard family’s lengthy legal battle was disputed in the U.K. High Court, Court of Appeal and Supreme Court, all of which ruled Charlie’s life support treatment should end.
British doctors of Great Ormand Street Hospital argued through their lawyers that Charlie’s condition could not be improved with treatment because he had already developed irreversible brain damage at five months old and that the effects of his rare condition were “unstoppable.”
The European Court of Human Rights refused to weigh in on the case.
Gard’s parents ended their fight with the courts on July 24 and their baby was moved to a hospice on July 27. They explained they were told by an American expert who flew to the U.K. to examine Charlie that the time during which an experimental treatment probably would have helped had been consumed by the court fight.
The couple said they felt “let down” following the protracted legal struggle and said they had been denied their final wish to be able to take their son home to die.
Charlies’ parents, of Bedfont, west London, requested again Thursday that the court allow them to take their son home to die, but the courts insisted he be taken to a hospice.
Charlie was described as “perfectly healthy” when he was born. Eight weeks later, however his condition rapidly worsened.
“Mommy 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,” his father Chris said. “We had the chance but we weren’t allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy.”
His mother Connie contended that her son’s life would have been spared if he was permitted to receive experimental therapy.
Time had been “wasted,” Connie said. “Had Charlie been given the treatment sooner he would have had had the potential to be a normal, healthy little boy.”
Shortly after news of the boy’s death was reported, Vice President Mike Pence tweeted “prayers and condolences to his loving parents during this difficult time.”
Saddened to hear of the passing of Charlie Gard. Karen & I offer our prayers & condolences to his loving parents during this difficult time.
— Vice President Pence (@VP) July 28, 2017