Photo: BBC
"For Charlie...it's too late."
By Emily Blackwood — Written on Jul 24, 2017
The battle for Charlie Gard's life is legally over.
While the rest of us wonder if and why the baby will be taken off life support, we now have an answer.
In a statement today, his parents, Chris Gard and Connie Yates, said they've decided to take their terminally ill son off life support. Their decision comes after the European Court of Human Rights ruled that they wouldn't be allowed to take him to the U.S. to receive an experimental treatment for his rare genetic disorder.
Not too long after he was born, Charlie was diagnosed with a genetic disease called mitochondrial DNA depletion syndrome, which weakens the muscles and has made it so the infant is unable to breathe or move on his own.
His parents say without life support, he'll die before his first birthday, which is next week.
In the video, you see a heartbroken and grief-stricken Chris Gard ask the public for some privacy while they share their final moments with their son.
‘We are so sorry we couldn’t save you," he said.
For an agonizing eight months, his parents battled with the UK High Court for their son's life. Connie Yates said Charlie's brain was never as damaged as the doctors at Great Ormond Street Hospital claimed it was.
However, today they found out that the damage was much worse than they realized.
A new scan of Charlie's brain revealed that his muscles deteriorated far past the option to do any experimental treatment which influenced Connie and Chris' decision to end the battle to save their son's life.
Grant Armstrong, the lawyer representing the family, said Charlie had run out of time, and that the U.S. doctor who was offering to do the experiential treatment, nucleoside therapy, said that the procedure could no longer be done.
He explained that there is now irreversible damage to Charlie’s muscle and tissue and that now, it is unfortunately “too late to treat Charlie.”
“The parents’ worst fears have been confirmed,” he said.
Katie Gollop, who represents GOSH, said the doctors disagreed when the parents said the therapy treatment could have been effective when MRI scans were done in January.
She said they thought the parents' decision to end his life was brave.
"All aspects of the clinical picture and all of Charlie's observations indicated that his brain was irreversibly damaged and that [the therapy] was futile," she said. They also accused the doctor in America of offering the couple false hope, and that he had a financial interest in the therapy he was offering for Charlie.
Charlie and his parents' plight caught national attention. A GoFundMe page for the infant gathered $1.5 million to cover the costs to get him to America and the experiential treatment. Their goal was $1.3 million.
Thousands of people support the parents' goal to try to save their son, and often times verbally disagreeing with the court. Campaigners who call themselves "Charlie's Army," chanted "shame on you judge," and "shame on GOSH." One female supporter yelled "He had a chance and you took it away," before collapsing to the ground.
The judge denied the idea that "Charlie has been a prisoner of the National Health Service," and called it "the antithesis of the truth."
"In this country, children have rights independent of their parents," he said.
The couple said they expected to have a two-day hearing with the court, but were instead told that time for Charlie had run out.
"There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – time," Connie told the court. "A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy."