Char­lie Gard, ‘beau­ti­ful lit­tle Boy’ at heart of dis­pute, dies

Kuwait Times - - FRONT PAGE -

Char­lie Gard, the ter­mi­nally-ill Bri­tish baby whose plight drew sym­pa­thy from Pope Fran­cis and US Pres­i­dent Don­ald Trump and sparked a de­bate about med­i­cal ethics, died on Fri­day, his mother said. His par­ents, Con­nie Yates and Chris Gard, had fought a lengthy le­gal bat­tle to al­low him to be taken to the United States for treat­ment for a rare ge­netic con­di­tion. But de­spite the in­ter­na­tional at­ten­tion brought by his case, he died ex­actly one week short of his first birth­day.

“Our beau­ti­ful lit­tle boy has gone. We are so proud of you, Char­lie,” his mother Yates said in a state­ment. A court had or­dered that the 11-month-old should be moved from hos­pi­tal to a hos­pice, where his life sup­port was with­drawn. Sup­port­ers around the world do­nated £1.35 mil­lion ($1.75 mil­lion, 1.5 mil­lion eu­ros) via an on­line fundrais­ing site to sup­port his par­ents and their ef­forts to keep their son alive, while 350,000 signed a pe­ti­tion de­mand­ing that he be al­lowed to re­ceive ex­per­i­men­tal treat­ment in the US.

Fol­low­ing news of the boy’s death, Pope Fran­cis, who sup­ported the cam­paign, tweeted: “I en­trust lit­tle Char­lie to the Fa­ther and pray for his par­ents and all those who loved him.” Bri­tish Prime Min­is­ter Theresa May said she was “deeply sad­dened” by the death while US Vice Pres­i­dent Mike Pence wrote he was: “Sad­dened to hear of the pass­ing of Char­lie Gard.”

Mi­to­chon­drial dis­ease

Gard was born on Au­gust 4 last year with a rare form of mi­to­chon­drial dis­ease that causes pro­gres­sive mus­cle weak­ness, in­clud­ing in key or­gans such as the heart. He was ad­mit­ted to hos­pi­tal at eight weeks old and his con­di­tion pro­gres­sively de­te­ri­o­rated. Gard’s par­ents fought a five-month le­gal bat­tle for him to be taken to the United States for ex­per­i­men­tal treat­ment.

They lost a se­ries of ap­peals in Bri­tish courts and the Euro­pean Court of Hu­man Rights in Stras­bourg. Their cam­paign led to of­fers of help from the United States and the Vat­i­can, lead­ing the hos­pi­tal to ask the courts for a fi­nal as­sess­ment of any new ev­i­dence. On July 2, Pope Fran­cis called for the cou­ple to be al­lowed to “care for their child un­til the end”, say­ing he had fol­lowed the case with “af­fec­tion and sad­ness”.

The fol­low­ing day, US Pres­i­dent Don­ald Trump said in a tweet: “If we can help lit­tle Char­lie Gard, as per our friends in the UK and the pope, we would be de­lighted to do so.” But the boy’s par­ents gave up their bat­tle last week, say­ing “time has run out”, af­ter they were shown scans in­di­cat­ing that his con­di­tion had de­te­ri­o­rated too far. “We are so sorry that we could not save you,” they said in an emo­tional state­ment at the High Court in Lon­don.

‘Agony’

Judge Ni­cholas Fran­cis summed up the emo­tion in­volved in the case. “It is im­pos­si­ble for any of us to com­pre­hend or even be­gin to imag­ine the agony to which Char­lie’s par­ents have been sub­jected in re­cent weeks and months as they have had to come to terms with the de­ci­sion that they have now made,” he said in a judg­ment.

The par­ents then asked for Gard to be taken to their home for his fi­nal days but were over­ruled by the hos­pi­tal which said the ven­ti­la­tor keep­ing him alive was too bulky to fit through their front door. They fi­nally agreed for him to be placed in a hos­pice. Pho­to­graphs of the baby dom­i­nated the front-pages of Bri­tain’s Satur­day news­pa­pers, which paid trib­ute to a “beau­ti­ful lit­tle boy”.

The Daily Mail ran with the head­line “Rest in Peace Car­lie”, with the cen­tre-right pub­li­ca­tion say­ing the 11-month-old baby had “cap­tured hearts around the world”. It said the case has “raised so many ques­tions about our age”. The case trig­gered de­bate about whether par­ents or the state should have a fi­nal say on a child’s well­be­ing and whether a child’s fate should be set­tled in a court­room. It pro­voked strong re­ac­tions, with an army of sup­port­ers shout­ing “shame on GOSH” fol­low­ing this week’s court hear­ing. The hos­pi­tal is­sued a state­ment Fri­day, say­ing: “Ev­ery­one at Great Or­mond Street Hos­pi­tal sends their heart­felt con­do­lences to Char­lie’s par­ents and loved ones at this very sad time.” —AFP

LON­DON: This file photo taken on July 24, 2017 shows Chris Gard (L) the fa­ther of ter­mi­nally-ill 11-month-old Char­lie Gard reads out a state­ment while Char­lie’s mother Con­nie Yates (r) looks on at the Royal Courts of Jus­tice. —AFP

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