For almost a year, Connie Yates and Chris Gard have experienced every parent’s worst nightmare: They have watched their infant son move inexorably toward death. Charlie was born with an extremely rare genetic disorder called mitochondrial DNA depletion syndrome. It’s a complicated-sounding name, but the symptoms are straightforward and brutal. They include generalized weakness, the inability to eat and breathe, and, ultimately, death.

Doctors at the Great Ormond Street Hospital in London have done everything possible to support Charlie from his birth, despite the steady progression of his underlying condition. When he was unable to eat and swallow, they began feeding him through a tube. When he was unable to breathe on his own they supported him through mechanical ventilation. But with no actual cure available, Charlie’s condition continued to deteriorate to the point where clinicians worried that continued use of life-prolonging therapies was no longer in his best interest, providing little benefit while protracting his suffering.

Charlie’s parents searched desperately for a treatment that could prolong their baby’s life. They were heartened this winter when they found a neurologist at an American medical center who agreed to accept Charlie for an experimental treatment called nucleoside bypass therapy. Initial excitement cooled somewhat when the neurologist clarified that the oral treatment, at best, would provide a small chance of improvement in brain function, perhaps allowing Charlie to smile. Nevertheless, Charlie’s parents began a fundraising campaign to try to get him to the United States.

Despite the Gards’ express desire to continue life-sustaining measures and to travel abroad, the Great Ormond Street Hospital went to the British courts in April seeking permission to remove life support. The court ruled in favor of the hospital, a ruling that was reaffirmed in May after an appeal by the parents to the British Supreme Court. “How can they do this to us?” Charlie’s mother screamed after the decision was handed down. Charlie’s parents appealed further to the European Court of Human Rights, which on June 27 concurred that the hospital could legally remove life-sustaining therapies.