Baby at end of life sup­port draws in Pope, Trump

Par­ents of 11-month-old with rare dis­or­der want to take him to U.S. for treat­ment

The Guardian (Charlottetown) - - OBITUARIES/NEWS -

A ter­mi­nally ill Bri­tish child has at­tracted the at­ten­tion of both the pres­i­dent of the United States and the pope. More than 1.3 mil­lion pounds ($1.68 mil­lion) has been raised to help 11-month-old Char­lie Gard travel to Amer­ica for treat­ment.

But lit­tle has changed for baby Char­lie, who suf­fers from a rare ge­netic dis­ease that has left him brain dam­aged and un­able to breathe un­aided. The life sup­port he is re­ceiv­ing at a Lon­don hos­pi­tal soon will be turned off over the ob­jec­tions of his par­ents, who want to take him to the United States for ex­per­i­men­tal ther­apy they be­lieve could pro­long his life.

A suc­ces­sion of judges has backed spe­cial­ists at Great Or­mond Street Hos­pi­tal who say the treat­ment won’t help Char­lie and may cause him to suf­fer. Bri­tain’s Supreme Court ruled it’s in the boy’s best in­ter­ests to be al­lowed to die with dig­nity. The Euro­pean Court of Hu­man Rights last week re­jected an ap­peal from Char­lie’s par­ents, Chris Gard and Con­nie Yates, ex­haust­ing their le­gal op­tions.

They have been spend­ing time with Char­lie be­fore he is taken off life sup­port.

By wad­ing into the case in re­cent days, Pres­i­dent Don­ald Trump and Pope Fran­cis have given Gard and Yates new hope and shined an in­ter­na­tional spot­light on an eth­i­cal de­bate that pits the rights of par­ents to de­cide what’s best for their chil­dren against the au­thor­i­ties with re­spon­si­bil­ity for en­sur­ing that peo­ple who can’t speak for them­selves re­ceive the most ap­pro­pri­ate care.

“The world is watch­ing,” reads the head­line across the top of char­lies­fight.org, the web­site ded­i­cated to Char­lie’s cause. “Two of the most pow­er­ful men in the world want to give Char­lie Gard his chance.”

Great Or­mond Street Hos­pi­tal said Tues­day there were no new up­dates in Char­lie’s care.

Trump tweeted Mon­day that he would be “de­lighted” to help Char­lie, who is suf­fer­ing from mi­to­chon­drial de­ple­tion syn­drome, which causes pro­gres­sive mus­cle weak­ness. The pres­i­dent’s com­ment came af­ter Pope Fran­cis is­sued a state­ment say­ing the par­ents’ rights to treat their son “un­til the end” should be re­spected.

The Vat­i­can chil­dren’s hos­pi­tal stud­ied whether it was pos­si­ble for Great Or­mond Street to trans­fer Char­lie to Rome. But Bam­bino Gesu hos­pi­tal Pres­i­dent Mariella Enoc said she was in­formed that the board of the Lon­don hos­pi­tal said Char­lie can­not be moved for le­gal rea­sons.

AP PHOTO

This is an un­dated hand out photo of Chris Gard and Con­nie Yates with their son Char­lie Gard pro­vided by the fam­ily, at Great Or­mond Street Hos­pi­tal, in Lon­don.

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