Bri­tish baby Char­lie Gard dies, was cen­tre of le­gal bat­tle

The Hamilton Spectator - - CANADA & WORLD - DANICA KIRKA, JILL LAW­LESS AND LEONORE SCHICK

LON­DON — Char­lie Gard, the ter­mi­nally ill Bri­tish baby at the cen­tre 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 suf­fered from a rare ge­netic dis­ease, mi­to­chon­drial de­ple­tion syn­drome, which left him brain dam­aged and un­able to move his limbs or breathe un­aided.

A fam­ily spokesper­son, Ali­son Smith-Squire, con­firmed Char­lie’s death on Fri­day, a day af­ter a judge or­dered that he be taken to a 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’s par­ents raised more than 1.3 mil­lion pounds ($1.7 mil­lion) to take him to the United States for an ex­per­i­men­tal med­i­cal ther­apy they be­lieved could pro­long his life. But Char­lie’s doc­tors at Great Or­mond Street Hos­pi­tal in Lon­don ob­jected, say­ing the treat­ment wouldn’t help and might cause him to suf­fer. The dis­pute ended up in court. Char­lie’s case be­came a flash­point for de­bates on the rights of both chil­dren and par­ents, on health-care fund­ing, med­i­cal in­ter­ven­tions, the re­spon­si­bil­i­ties of hos­pi­tals and med­i­cal work­ers and the role of the state.

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 f ailed to agree on an end-of-life care plan for the in­fant.

Un­der Bri­tish law, it is com­mon for courts to in­ter­vene when par­ents and doc­tors dis­agree on the treat­ment of a child. In such cases, the rights of the child take pri­macy over the par­ents’ right to de­cide what’s best for their off­spring.

The case made it all the way to Bri­tain’s Supreme Court as Char­lie’s par­ents re­fused to ac­cept de­ci­sions by a se­ries of judges who backed Great Or­mond Street. But the Supreme Court agreed with the lower courts, say­ing it was in Char­lie’s best in­ter­ests that he be al­lowed to die.

The case caught the at­ten­tion of Trump and the pope af­ter the Euro­pean Court of Hu­man Rights re­fused to in­ter­vene. The two lead­ers sent tweets of sup­port for Char­lie and his par­ents, trig­ger­ing a surge of grass­roots ac­tion, in­clud­ing a num­ber of U.S. right-to-life ac­tivists who flew to Lon­don to sup­port Char­lie’s par­ents.

The in­ter­ven­tion of two of the world’s most pow­er­ful men made the case a talk­ing point for the planet.

The heated commentary prompted Judge Fran­cis to crit­i­cize the ef­fects of so­cial me­dia and those “who know al­most noth­ing about this case but who feel en­ti­tled to ex­press opin­ions.”

In the end, the in­creased at­ten­tion did lit­tle for Char­lie.

His par­ents gave up their le­gal bat­tle on Mon­day af­ter scans showed that Char­lie’s mus­cles had de­te­ri­o­rated so much that the dam­age was ir­re­versible. “Mummy and Daddy love you so much Char­lie, we al­ways have and we al­ways will and we are so sorry that we couldn’t save you,” his par­ents wrote when they an­nounced their de­ci­sion. “We had the chance but we weren’t al­lowed to give you that chance.

“Sweet dreams baby. Sleep tight, our beau­ti­ful lit­tle boy.”

THE AS­SO­CI­ATED PRESS

Chris Gard and Con­nie Yates with their son Char­lie Gard at Great Or­mond Street Hos­pi­tal in Lon­don.

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