Two U.K. parents are fighting a battle no parent should ever have to fight. Chris Gard and Connie Yates of west London have been engaged in a months-long legal dispute with their infant son’s doctors, who want to take the child off life support.
Ten-month-old Charlie Gard suffers from a rare condition called mitochondrial depletion syndrome, which affects the part of the cell that supplies energy to his muscles, kidneys, and brain. The infant has been in intensive care since last October, the BBC reported.
When Charlie’s parents learned of a potentially life-saving treatment available in the United States, they faced backlash from medical professionals who insisted they should allow their child to “die with dignity.”
According to the BBC, Charlie’s doctors have alleged that the baby is unable to see, hear, move, cry, or swallow. They have also claimed that the treatment Charlie would receive in the U.S. would be experimental, and ultimately, ineffective.
Gard and Yates couldn’t disagree more. On Monday, the parents shared a photo on Facebook of their son with his eyes wide open:
“A picture speaks a thousand words!!” wrote Connie Yates.
For the past few months, Charlie’s parents have been living a legal nightmare, filing appeal after appeal, only to face resistance every step of the way.
Back in April, a High Court judge ruled in favor of Charlie’s doctors. In May, three Court of Appeal judges upheld the ruling. And just last week, three Supreme Court justices “dismissed a further challenge by the couple,” the BBC reported.
Of course, that didn’t stop Gard and Yates. After losing the appeal to the U.K. Supreme Court, they appealed their case to the European Court of Human Rights. On Tuesday, the Strasbourg court ordered the British government to extend “such treatment and nursing care as may be appropriate to ensure that he suffers the least distress and retains the greatest dignity consistent, insofar as possible, with maintaining life,” The Guardian reported.
Terminally-ill Charlie Gard to stay on life support until 19 June as European Court of Human Rights considers case https://t.co/7oI7moHDqC pic.twitter.com/FToDsofYPU
— BBC Breaking News (@BBCBreaking) June 13, 2017
Charlie’s doctors have been ordered to keep the child on life support through Monday, June 19, allowing the boy’s parents more time to put together a legal case stating why he should be allowed to go to the U.S. for treatment.
Charlie’s case carries weighty implications for the future of human rights, especially when it comes to society’s most vulnerable populations: children and the elderly. The term “death with dignity” is thrown around quite a bit today, and a case like this will make a statement about how governing officials and medical professionals regard human life and the role the family should play in stewarding it.
Last week, Gard and Yates’ lawyer, Richard Gordon, told the U.K. Supreme Court that a case like this “should not normally come before the court,” The Guardian reported. Parental responsibility, he argued, is on the chopping block.
“The issue is whether the state has the power to intrude on decisions the parents have made in order to mandate that child’s death before it might come to an end,” Gordon said. “These are model parents trying to do all they possibly can for the benefit of their child. Their view on what is best for Charlie differs from the court.”
Gard and Yates have launched a GoFundMe campaign to help cover the medical care Charlie would receive in the U.S. So far, more than 83,000 people have donated, and the couple has raised the equivalent of more than $1.6 million.
The couple has also launched a petition to release Charlie from Great Ormond Street Hospital, where he has been receiving treatment for the past several months.
You can learn more about Charlie’s case by visiting CharliesFight.org.