The plight of Charlie Gard’s parents to keep him alive has captured hearts around the world, but on Friday, his parents said that British courts ruled it's time to let the terminally ill 10-month-old boy die, the Washington Post reported. The decision has been met with controversy, as some say it should be the parents who decide, not the courts. It's not clear exactly when the boy's life support will be withdrawn, but the Guardian reported the parents have been given a little more time to say goodbye to their son.

The court decision means he can't go to the U.S. for experimental treatment called nucleoside therapy, which his parents wanted. Charlie has a genetic disease that has caused extensive brain damage, and has been treated at Great Ormond Hospital in London since his birth last August. However, doctors in the UK have insisted the child, who can no longer see, hear, or move, has no chance of survival and that taking him off life support is in his best interest, The Washington Post reported.

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“He'd fight to the very end, but we're not allowed to fight for him anymore,” said Charlie’s father Chris in a video statement. “Our parental rights have been stripped away. We can't even take our own son home to die. We've been denied that. Our final wish if it all went against us, can we take our little boy home to die, and we are not allowed."

“Not only are we not allowed to take our son to an expert hospital to save his life, we also can't choose how or when our son dies," said Connie Yates, Charlie’s mother, The Daily Mail reported.

The fight to save Charlie’s life and send him to America for experimental treatment got as far as the European Court of Human Rights. The court ruled the 10 month old should die naturally rather than remain on life support.

Charlie was born with an extremely rare condition known as infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, or MDDS. According to The Daily News, although he appeared healthy at birth, at around eight weeks old, he was floppier than other babies. From there, the condition quickly escalated and Charlie has been hooked up to a ventilator ever since.

According to the United Mitochondrial Disease Foundation, Charlie’s disease is caused by a failure in the mitochondria, the cells that are responsible for making the majority of energy needed to sustain life. The nucleoside therapy would theoretically repair the mitochondrial DNA, but at the time is still very experimental and has never been conducted on a case as severe as Charlie’s.

 

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