Ten months after their son Charlie Gard was born in the terminal stages of a disease called mitochondrial DNA depletion syndrome, parents Connie and Chris are doing everything in their power to give their son a fair chance at life.
The baby boy is believed to be one of only 16 people to ever have the condition—making treatment and resources nearly impossible.
The couple from Bedfont, west London, found a specialist in the United States who offers an experimental therapy called nucleoside, but after raising more than $1.6 million dollars to transport their son for the treatment, doctors refused to let him go.
Instead, they suggested Charlie be taken off life support and allowed to “die with dignity.”
Upon having their parental rights stripped from them by doctors, Connie and Chris have embarked on a journey of justice for their son—taking their appeal all the way to the European Court of Human Rights.
In an April 11 court hearing, judges ruled in favor of the doctors, allowing Charlie’s life support machine to be turned off as medical professionals see fit.
The court ruled the baby boy must be kept on life support until midnight on June 13.
On Sunday, just one day before doctors plan to let Charlie “die with dignity,” Connie shared a photo on Facebook of her son with his eyes wide open:
With the photo she wrote, “A picture speaks a thousand words!!” referring to the court decision that said Charlie’s quality of life was limited because “he is not consistently able to open his eyes enough to be able to see.”
The ruling suggested that if he is unable to open his eyes often, his brain is failing to learn how to see.
Lawyers representing Connie and Chris say parents should be free to make decisions about their children’s medical treatments unless any proposed treatments pose a risk of significant harm.
Our prayers are with Connie, Chris and Baby Charlie as the final hours approach.
We have a BIG God who works BIG miracles. Praying that He would show up and do something only He can do to give Charlie a second chance at life.