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Parents Of Terminally Ill British Baby Charlie Gard End Legal Fight

Chris Gard and Connie Yates, the parents of critically ill infant Charlie Gard, arrive at a court session in London on Monday.
Jonathan Brady
/
AP

The parents of terminally ill British baby Charlie Gard have ended their legal fight to transport him to the U.S. for experimental treatment, concluding a months-long saga that has raised nearly $1.75 million and elicited support from Pope Francis and President Trump.

The couple's lawyer, Grant Armstrong, told the London High Court that new medical tests have shown that the experimental treatment would not help at this point, according to The Associated Press. "It's too late for Charlie," Armstrong said. "The damage has been done."

Charlie suffers from a rare inherited mitochondrial disease called MDDS, for which there is no known cure, according to the Great Ormond Street Hospital which is treating him. The hospital adds that the infant has "severe progressive muscle weakness and cannot move his arms or legs or breathe unaided."

According to the BBC, Armstrong told the judge "that US neurologist Dr. Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week."

NPR's Joanna Kakissis reported that the case is focused on this question: "Should parents be the ones who have the final say in treating critically ill children? Or should doctors?"

"Charlie's doctors at Great Ormond Street Hospital in London say they worry the experimental treatment, which has not even undergone clinical trials, could make the baby suffer," Joanna reports. "They say his life support should be shut off so he can die peacefully."

Charlie's parents, Chris Gard and Connie Yates, raised money by crowdfunding for the experimental treatment in the U.S. and engaged in a legal battle in multiple courts. As NPR's Amy Held reported:

"A series of British court rulings have found that continuing Charlie's treatment could cause 'significant harm.' And [last month], the European Court of Human Rights ruled that the hospital can take him off life support, in accordance with Charlie's doctors' wishes."

Speaking outside the court Monday, Yates said: "Charlie did have a real chance of getting better. ... Now we will never know what would have happened if he got treatment," according to Reuters.

Earlier this month, President Trump said in a tweet that "If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so."

The case has resonated internationally, and the chairman of the hospital said in a statement that members of its community have been "subjected to a shocking and disgraceful tide of hostility and disturbance." Mary MacLeod added that "thousands of abusive messages have been sent to doctors and nurses whose life's work is to care for sick children," including death threats.

The AP writes that the judge condemned the abuse, "but stressed that these had nothing to do with the boy's parents." The wire service adds that at the hearing, Judge Nicholas Francis said, "No parent could have done more for their child."

Copyright 2020 NPR. To see more, visit https://www.npr.org.

Merrit Kennedy is a reporter for NPR's News Desk. She covers a broad range of issues, from the latest developments out of the Middle East to science research news.
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