Baby Charlie Gard dies

Local media reported that Charlie Gard, an 11-month-old British baby born with an extremely rare genetic disease, had died on Friday in London. "Our beautiful little boy has gone, we are so proud of you Charlie," the baby's mother, Connie Yates, said in a statement.

The baby's death marks the end not only of a life but also of a drawn-out legal battle. For five months his parents, Connie Yates and Chris Gard, had sought approval from British courts to have the child transported to the United States for a treatment never attempted before. The courts, however, after hearing much medical evidence, ruled that it would not be in the baby's best interest to have him transported to the US to undergo experimental treatment advocated by Michio Hirano, a US professor of neurosurgery.

On Thursday, Britain's High Court ruled that Gard be removed from the hospital and transferred to a hospice, where his life-support ventilation would be removed.

The 11-month-old suffered from a rare genetic condition known as infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MMDS), which causes a progressive deterioration of muscles and organs. Admitted to the hospital when he was just eight weeks old, he could not see, hear or swallow and required a ventilator to breathe. Doctors at Great Ormond Street Hospital in London had advised against allowing the baby to be moved, saying that such treatment would not help him and only serve to prolong his suffering.  

The case quickly became a lightning rod, drawing international attention and sparking a heated debate on social media and in the press over medical ethics and the right to decide the fate of a sick child. This ferocity of the debate led to repeated threats of violence and even death threats against members of the hospital staff.

Two of the most prominent people to weigh in during that time were US President Donald Trump, who said he "would be delighted" to help the baby, and Pope Francis, who made pleas for the parents to be allowed to do everything possible to help their child.

Supporters around the world donated some 1.5 million euros ($1.75 million) to aid the parents in their legal battle, which took them through the British court system and eventually to the British High Court and the European Court of Human Rights in Strasbourg.

US Vice President Mike Pence tweeted that he had been saddened by news of the baby's death. Pence had previously politicized the case, using it as a warning against the dangers of state-funded health care in his country's ongoing debate on that subject.

Charlie Gard died in the hospice Friday, exactly one week before his first birthday.

js/bk (AFP, Reuters)