Connie and Chris Gard are doing everything in their power to give their son Charlie Gard a chance at a normal life ten months after their son was born in the terminal stages of a disease known as mitochondrial DNA depletion syndrome.
It is believed that the baby boy is one of only 16 people who have ever had the condition, which renders the availability of treatment and resources extremely unlikely.
The couple from Bedfont, west London, located a specialist in the United States who provides an unproven treatment known as a nucleoside. Even though they raised more than $1.6 million to transport their son to the United States for treatment, doctors refused to let him go.
Instead, they suggested that Charlie’s life support be turned off and that he be allowed to “die with dignity.”
Connie and Chris have embarked on a mission to seek justice for their son after being denied their parental rights by medical professionals. They have taken their case to the European Court of Human Rights to rectify the situation.
The baby boy must be kept on life support until June 13 at midnight, according to the court.
Connie posted a photo of her son with his eyes wide open to Facebook on Sunday, just one day before the doctors plan to allow Charlie to “die with dignity.”
According to the ruling, if he is unable to open his eyes frequently, his brain is failing to learn how to see.
The attorneys who represent Connie and Chris believe that parents should have the right to make decisions regarding the medical care given to their children, unless there is a significant risk of harm associated with any of the proposed treatments.
As the final hours draw closer, our thoughts and prayers are with Connie, Chris, and Baby Charlie.
UPDATE: Doctors have ordered that a boy be taken off life support and given him six more days to live.
But, for the third time in three months, Charlie and his parents were given an unexpected extension.
Connie Yates and Chris Gard have raised more than 1.6 million dollars to bring their son to the United States for an experimental treatment that they believe will save his life. Just two months after he was born, Charlie was given a diagnosis indicating that he was already in the terminal stages of a disease known as mitochondrial DNA depletion syndrome. The condition has only been diagnosed in 16 people ever.
At a hearing on April 11, the judge ruled that the doctors treating Charlie would have the authority to turn off the life support machine beginning on May 30, at midnight. But because the European Supreme Court decided to take a look at the case at the very last minute, Charlie was granted a few more weeks of life.
The attorneys who represent Connie and Chris believe that parents should have the right to make decisions regarding the medical care that their children receive, unless there is a significant risk of harm associated with any proposed treatments.