Terminally Ill British Baby Charlie Gard, Dies, His Parents Say

The 11-month-old’s case touched on sensitive moral and political questions about the role of the state at the end of life.
Charlie Gard, the 11-month-old terminally ill British baby, has died, his parents announced Friday, just days after ending their legal challenge to take him to the U.S. for experimental treatment.
“Our beautiful little boy has gone, we are so proud of you Charlie,” his parents said in a statement.
Connie Yates and Chris Gard, Charlie’s parents, ended Monday their legal fight to take him to the U.S. after a specialist who examined the baby said it was too late to treat him with experimental nucleoside therapy. Charlie had been on life support since October 2016—and following his parents’ decision Monday the question was whether Charlie would die at home or be taken to hospice care. His parents said it was their “last wish” for Charlie to die at home, but they were unable to find a round-the-clock team that could look after him. Charlie was taken Thursday to a hospice; he died Friday.

As I reported this week:
Charlie, who was born in August 2016, was diagnosed with a rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome; he suffered from brain damage and couldn’t move his limbs. Doctors in the U.K. advised his parents to end life support, but Gard and Yates raised funds to transfer him to the U.S. for the experimental treatment. British medical experts—and three courts—said prolonging treatment would cause Charlie  “significant harm.” The European Court of Human Rights ruled in June against the parents, all but ensuring Charlie would be taken off life support.
As my colleague Emma Green wrote, “Charlie’s case touches on some of the most sensitive moral and political questions about the role of the state at the end of life.” Indeed both Pope Francis and President Trump offered to help.


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