The Morning Journal (Lorain, OH)

British baby at center of legal battle dies

- By Danica Kirka and Jill Lawless

Charlie Gard, the terminally ill British baby at the center of a legal and ethical battle, died.

LONDON » Charlie Gard, the terminally ill British baby at the center of a legal and ethical battle that attracted the attention of Pope Francis and U.S. President Donald Trump, died Friday. He was one week shy of his first birthday.

Charlie’s parents fought for the right to take him to the United States for an experiment­al medical treatment for his rare genetic disease, mitochondr­ial depletion syndrome, which left him brain damaged and unable to breathe unaided. His case ended up in the courts when doctors opposed the plan, saying the untested therapy wouldn’t help Charlie and might cause him to suffer.

A family spokeswoma­n, Alison Smith-Squire, confirmed Charlie’s death on Friday, a day after a judge ordered that he be taken off a ventilator at the Great Ormond Street Hospital in London and moved to an undisclose­d hospice for his final hours.

“Our beautiful little boy has gone, we’re so proud of him,” his mother, Connie Yates, said in a statement.

Charlie was seemingly healthy at birth but soon began to weaken. He was admitted to Great Ormond Street Hospital, Britain’s premier children’s hospital, when he was two months old and remained there until almost the end of his life.

His legal case became a flashpoint for debates on the rights of children and parents, on health-care funding, medical interventi­ons, the responsibi­lities of hospitals and medical workers and the role of the state. It gained internatio­nal attention last month when Pope Francis and President Trump expressed their support for Charlie and his family.

The interventi­on of two of the world’s most powerful men made the case a worldwide talking point. Images of Charlie hooked to a tube while dozing peacefully in a star-flecked navy blue onesie graced websites, newspapers and television news programs.

The pope reacted quickly to the news of Charlie’s death, tweeting late Friday “I entrust little Charlie to the Father and pray for his parents and all those who loved him.”

Charlie’s parents raised more than $1.7 million to pay for the experiment­al treatment they believed could prolong his life. But British courts consistent­ly accepted the hospital’s position, ruling that it was in Charlie’s best interests that he be allowed to die.

After months of legal battles, High Court judge Nicholas Francis ruled Thursday that Charlie should be transferre­d to a hospice and taken off life support after his parents and the hospital failed to agree on an end-of-life care plan.

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