Sick U.K. child remains at the center of debate

LONDON — A terminally ill British child has attracted the attention of both the president of the United States and the pope, and more than $1.6 million has been raised to help 11-month-old Charlie Gard travel to America for treatment.

But little has changed for baby Charlie, who suffers from a rare genetic disease that has left him brain damaged and unable to breathe unaided. The life support he is receiving at a London hospital soon will be turned off over the objections of his parents, who want to take him to the United States for experimental therapy they believe could prolong his life.

A succession of judges has backed specialists at Great Ormond Street Hospital who say the treatment won’t help Charlie and may cause him to suffer. Britain’s Supreme Court ruled it’s in the boy’s best interests to be allowed to die with dignity. The European Court of Human Rights last week rejected an appeal from Charlie’s parents, Chris Gard and Connie Yates, exhausting their legal options.

By wading into the case in recent days, President Donald Trump and Pope Francis have given Gard and Yates new hope and shined an international spotlight on an ethical debate that pits the rights of parents to decide what’s best for their children against the authorities with responsibility for ensuring that people who can’t speak for themselves receive the most appropriate care.

“The world is watching,” reads the headline across the top of charliesfight.org, the website dedicated to Charlie’s cause. “Two of the most powerful men in the world want to give Charlie Gard his chance.”

Great Ormond Street Hospital said Tuesday there were no updates on Charlie’s care.

Trump tweeted Monday that he would be “delighted” to help Charlie, who is suffering from mitochondrial depletion syndrome, which causes progressive muscle weakness. The president’s comment came after Pope Francis issued a statement saying the parents’ rights to treat their son “until the end” should be respected.

The Vatican children’s hospital studied whether it was possible for Great Ormond Street to transfer Charlie to Rome. But Bambino Gesu hospital President Mariella Enoc said she was informed that the board of the London hospital determined that, for legal reasons, Charlie cannot be moved.

However, the matter was still being examined Tuesday.

The fight over keeping Charlie alive is not about money.

Instead, it revolves around an ethical debate about what’s best for the child. Under British law, it is normal for courts to intervene when parents and doctors disagree on the treatment of a child.

The rights of the child take primacy.