NPR, July 24, 2017
Merrit Kennedy


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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."

Gard 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?" [...]

bioethics clinical research doctor-patient relationship end-of-life genetics human rights human subjects research international judicial opinions pediatrics