Claire Bernish – June 9, 2017
Imagine discovering your infant is one of only sixteen people ever to be diagnosed with a fatal genetic affliction for which the only shred of hope would entail a flight abroad for experimental treatment; but — rather than simply making the albeit complicated and costly trip — the highest court in the land rules your child must die.
This dystopian nightmare might sound like a cinematic creation, yet it’s reality for parents Chris Gard and Connie Yates, whose nine-month-old son, Charlie, suffers from mitochondrial DNA depletion syndrome — a genetic condition affecting cells’ ‘powerhouses’ — inherited when both parents unknowingly carried the faulty gene.
Charlie has been on life support since last October, so his desperate parents sought an experimental therapy procedure in the U.S. to try to save, or at least extend, his life — and raised over £1.3 million (roughly $1.65 million) through online crowdfunding to do so.
Two months ago, the British Supreme Court callously ruled Charlie’s life support at Great Ormond Street Hospital should be withdrawn in order for him to “die with dignity” — so Gard and Yates filed an appeal in hopes of staving off their infant’s imminent demise.
On Thursday, the Court of Appeal shattered their aspirations of saving Charlie’s life — ruling there would be no trip, as prospective treatment could not possibly guarantee improvement.