30 Last hope for Char­lie

Par­ents await do-or die de­ci­sion

Sunday Herald Sun - - News - ELLEN WHINNETT LON­DON

A COURT will rule next week on whether Char­lie Gard, the lit­tle Bri­tish boy break­ing hearts across the world, gets one fi­nal chance at a bet­ter life.

The plight of the crit­i­cally ill baby, who is be­ing kept alive by ven­ti­la­tors in the Great Or­mond St chil­dren’s hospi­tal in Lon­don, has be­come a global cause célèbre, with ev­ery­one from Pope Fran­cis to Don­ald Trump weigh­ing in.

His dis­traught par­ents, Con­nie Yates, 31, and Chris Gard, 33, from west Lon­don, want to take him to the US for ex­per­i­men­tal treat­ment they hope could save him.

But doc­tors car­ing for him at Great Or­mond St, the most re­spected chil­dren’s hospi­tal in the world, say he is suf­fer­ing, has ir­re­versible brain dam­age, and that he should be al­lowed to die with dig­nity.

The case has been through the High Court, the Supreme Court, the Court of Ap­peal and the Euro­pean Court for Hu­man Rights, all of which ruled against the par­ents.

At the cen­tre of the storm is lit­tle Char­lie, a beau­ti­ful 11month-old baby who lies mo­tion­less in a hospi­tal crib, his stuffed mon­key by his side.

“If he’s still fight­ing, we’re still fight­ing,’’ Char­lie’s mother, Ms Yates, said out­side the court on Mon­day, when a pe­ti­tion with 350,000 sig­na­tures protest­ing the doc­tors’ de­ci­sion was handed over.

“He’s our son, he’s our flesh and blood. We feel that it should be our right as par­ents to de­cide to give him a chance at life. There’s noth­ing to lose. He de­serves a chance.’’

Born ap­par­ently healthy, he in­her­ited a rare mi­to­chon­drial dis­ease, which de­stroyed the cells of his or­gans and mus­cles.

His di­ag­no­sis is in­fan­tile onset en­cephalomy­o­pathic mi­to­chon­drial DNA de­ple­tion syn­drome. He is thought to be one of only 16 chil­dren in the world with the con­di­tion.

He now can­not eat, move, cry or breathe, and is be­ing kept alive through in­tra­venous nu­tri­tion and a ven­ti­la­tor.

Af­ter hear­ing about a highly ex­per­i­men­tal treat­ment in the US called nu­cle­o­side ther­apy, which in­volves a course of drugs taken orally, his par­ents launched a fundraiser to take him to the US, with the pub­lic con­tribut­ing $2.1 mil­lion.

But doc­tors in Lon­don went to court to pre­vent his par­ents tak­ing him over­seas.

The High Court re­opened the case af­ter in­tense lob­by­ing, and on Thurs­day heard new ev­i­dence via video link from a pro­fes­sor of neu­rol­ogy in New York, which called the pre­vi­ous judg­ment into ques­tion.

The pro­fes­sor, whose name is sup­pressed, gave ev­i­dence in April that he be­lieved the brain dam­age was likely to be ir­re­versible. But on Thurs­day he said there was a small but sig­nif­i­cant im­prove­ment in brain func­tion.

He also con­firmed he had spo­ken to the White House about the new ev­i­dence, a day af­ter Pres­i­dent Trump tweeted sup­port for Char­lie.

A rul­ing will be handed down on Char­lie Gard next week.

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