Bri­tish baby Char­lie Gard suc­cumbs at 11 months

World at­ten­tion was fo­cused on the ef­forts of his par­ents to save their son

USA TODAY Weekend Extra - - NEWS - Kim Hjelm­gaard @khjelm­gaard USA TO­DAY

Char­lie Gard, a ter­mi­nally LON­DON ill Bri­tish baby at the cen­ter of a high-pro­file le­gal fight to take him to the United States for treat­ment, has died. He was 11 months old.

Char­lie’s mother, Con­nie Yates, con­firmed his death on Fri­day. “Our beau­ti­ful lit­tle boy has gone, we are so proud of you Char­lie,” she said in a state­ment.

Char­lie died in a Lon­don hos­pice, where he was trans­ferred on Thurs­day af­ter the Bri­tish High Court ruled — against his par­ents wishes — that he should not be al­lowed to die at home. Af­ter a five-month le­gal fight, the same court ruled that his rare ge­netic dis­ease that caused pro­gres­sive brain dam­age and mus­cle weak­ness would not re­spond to ex­per­i­men­tal ther­apy be­ing of­fered by an Amer­i­can neu­rol­o­gist.

Char­lie’s con­di­tion was lit­tle known. Mi­to­chon­drial DNA de­ple­tion left him un­able to move. He couldn’t breathe with­out a ven­ti­la­tor. He was blind and deaf. How­ever, over the course of his par­ents’ bat­tle to se­cure for him a rad­i­cal, untested ther­apy in the U.S., his plight, and the ded­i­ca­tion of Yates and her hus­band Chris Gard, be­came well known — it even at­tracted the at­ten­tion of Pres­i­dent Trump and Pope Fran­cis.

Char­lie died one week be­fore his first birth­day.

At birth, Char­lie ap­peared to be healthy. His par­ents dis­cov­ered he had a ge­netic dis­or­der — only di­ag­nosed in an es­ti­mated 15 other peo­ple — at a few months when he be­gan los­ing move­ment in his arms and legs and started hav­ing fre­quent seizures.

Un­til his trans­fer to the hos­pice, Char­lie had been cared for at Lon­don’s Great Or­mond Street Hospi­tal, one of the world’s lead­ing pe­di­atric hos­pi­tals. As his health started de­clin­ing, his par­ents be­gan to dis­agree with the hospi­tal’s doc­tors over what type of treat­ment Char­lie should be of­fered.

Re­search­ing their son’s con­di­tion, Yates and Gard came across a doc­tor at Columbia Uni­ver­sity Med­i­cal Cen­ter who was will­ing to treat Char­lie with nu­cle­o­side by­pass ther­apy. This doc­tor, Mi­chio Hi­rano, had tried the treat­ment on pa­tients with a far less se­vere form of Char­lie’s dis­or­der to vary­ing de­grees of suc­cess. They thought it was worth a shot. Over the next sev­eral months, they raised $1.7 mil­lion to pay for it.

But Great Or­mond Street Hospi­tal dis­agreed and a le­gal fight erupted, be­cause in Bri­tain, un­like is usu­ally the case in the U.S., it is the courts,not the pa­tient or fam­ily, who de­cide how to pro­ceed when there is a dis­pute about med­i­cal treat­ment. Yates and Gard took the case all the way to the Bri­tish Supreme Court and the Euro­pean Court of Hu­man Rights. Both up­held the High Court’s rul­ing, which to the par­ents was a bru­tal and shock­ing one: Char­lie’s life-sup­port ma­chines should be turned off.

Yet the hospi­tal, backed by Bri­tish courts, saw it dif­fer­ently. Switch­ing off Char­lie’s life-sup­port treat­ment would al­low him to die in dig­nity and per­haps even put an end to his pain, which doc­tors couldn’t fully de­ter­mine whether he was ex­pe­ri­enc­ing.

Mean­while, the world was watch­ing.

“If we can help lit­tle #Char­lieGard, as per our friends in the U.K. and the Pope, we would be de­lighted to do so,” Trump tweeted. Pope Fran­cis said he was ob­serv­ing the case “with af­fec­tion and sad­ness.” Sev­eral Repub­li­can con­gress­men spon­sored leg­is­la­tion aimed at grant­ing Char­lie and his fam­ily U.S. res­i­dency. Oth­ers spoke of cit­i­zen­ship.

On Mon­day, af­ter Hi­rano told a Bri­tish judge that he no longer be­lieved Char­lie would re­spond to treat­ment, Yates and Gard dropped their le­gal fight to take him abroad. Still, they had one last wish, to take their son home to die.

“We just want some peace with our son, no hospi­tal, no lawyers, no courts, no me­dia, just qual­ity time to say good­bye,” Yates said in a state­ment.

They lost that fight as well. The hospi­tal was con­cerned about the prac­ti­cal­ity of send­ing Char­lie home given his com­plex care needs.

The hospi­tal of­fered its con­do­lences on Fri­day even­ing.

“Our beau­ti­ful lit­tle boy has gone, we are so proud of you Char­lie.” Con­nie Yates, the boy’s mother

AP

Chris Gard and Con­nie Yates with their son, Char­lie Gard. Yates said Fri­day the boy, who had a rare ge­netic dis­ease, died.

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