Charlie Gard, the critically ill British baby at the centre of a legal battle that attracted worldwide attention and debate, has died days short of his first birthday, according to a family spokeswoman.
Charlie suffered from a rare genetic disease, mitochondrial depletion syndrome, which caused brain damage and left him unable to breathe unaided.
The 11-month-old’s plight became known around the world when his parents, Chris Gard and Connie Yates, battled a legal fight to take their child to the United States for experimental treatment.
“Our beautiful little boy has gone, we are so proud of you Charlie,” Connie Yates, the baby’s mother, was quoted as saying by the Daily Mail newspaper.
“Everyone at Great Ormond Street Hospital sends their heartfelt condolences to Charlie’s parents and loved ones at this very sad time,” spokeswoman for the hospital where Charlie was being treated said in a statement.
On Saturday, Pope Francis posted on Twitter he “entrusted little Charlie to the Father” after he had earlier sent messages of support during the court battle.
I entrust little Charlie to the Father and pray for his parents and all those who loved him.
— Pope Francis (@Pontifex) July 28, 2017
His parents, Chris Gard and Ms Yates, raised more than 1.3 million pounds ($2.14 million) to take him to the US for the treatment, but Charlie’s doctors objected, saying the treatment would not help and might cause him to suffer, and the dispute ended up in court.
The case became a flashpoint for debates on healthcare funding, medical intervention, the role of the state and the rights of children.
After months of legal battles, High Court Judge Nicholas Francis ruled this week that Charlie should be transferred to a hospice and taken off life support after his parents and the hospital that had been treating him failed to agree on an end-of-life care plan for the infant.
Under British law, it is common for courts to intervene when parents and doctors disagree on the treatment of a child.
In such cases, the rights of the child take primacy over the parents’ right to decide what is best for their offspring.
The principle applies even in cases where parents have an alternative point of view, such as when religious beliefs prohibit blood transfusions.
The case made it all the way to Britain’s Supreme Court as Charlie’s parents refused to accept decisions by a series of judges who backed Great Ormond Street.
But the Supreme Court agreed with the lower courts, saying it was in Charlie’s best interests that he be allowed to die.
Charlie’s case gains worldwide attention
The case caught the attention of US President Donald Trump and Pope Francis after the European Court of Human Rights refused to intervene.
The two leaders sent tweets of support for Charlie and his parents, triggering a surge of grassroots action, including a number of US right-to-life activists who flew to London to support Charlie’s parents.
The intervention of two of the world’s most powerful men made the case a talking point around the world.
Images of Charlie hooked to a tube while dozing peacefully in a star-flecked navy blue onesie graced websites, newspapers and television news programs.
The heated commentary prompted Judge Francis to criticise the effects of social media and those “who know almost nothing about this case but who feel entitled to express opinions”.
But in the end, the increased attention did little for Charlie.
While offers of help from the Vatican’s Bambino Gesu children’s hospital in Rome and doctors at the Columbia University Medical Centre in New York were enough to reopen the case, the High Court ultimately decided the proposed treatment would not help Charlie.
His parents gave up their fight earlier this week after scans showed that Charlie’s muscles had deteriorated so much that the damage was irreversible.
“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,” his parents wrote when they announced their decision.
“We had the chance but we weren’t allowed to give you that chance.
“Sweet dreams baby. Sleep tight, our beautiful little boy.”
— with agencies