British baby caught the world’s attention as he struggled with a rare disorder…
Charlie Gard, the British baby who caught the world’s attention as he struggled with a rare genetic disorder while his parents fought the courts for the right to place him on an experimental treatment plan, died Friday, July 28, 2017, according to The Guardian.
Charlie spent much of his short life in a hospital bed at Great Ormond Street Hospital (GOSH) in London on life-support machines, unable to hear, see, or breathe on his own. Born Aug. 4, 2016, he initially appeared to be a perfect, healthy baby. But within weeks, he began to exhibit symptoms that would lead doctors to diagnose him with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome.
The first of the symptoms that drove his parents, Connie Yates and Chris Gard, to take him to the doctor was a delay in weight gain. By the time Charlie was hospitalized in mid-October, he had already begun to undergo brain damage.
Charlie’s parents held out hope that his condition was reversible. An experimental treatment, nucleoside bypass therapy, was available in the U.S., though it had never been tested on Charlie’s extremely rare condition. It did show promise with patients who had a similar disorder, one that attacks just the muscles – unlike Charlie’s, which also affected the brain and other organs.
Yates and Gard felt confident enough about the treatment that they began a crowdfunding campaign to raise money for transportation and treatments. Within two months, they had raised 1.3 million pounds – about $1.72 million – and were ready to take Charlie to America.
But they were blocked by the British courts: GOSH had considered offering the experimental treatment to Charlie, but it was determined that his condition had already progressed beyond the point of reversibility, and his brain damage was too severe to be helped. GOSH’s doctors, in consultation with other experts, decided that Charlie should be taken off life support and allowed to die with dignity.
Yates and Gard disagreed with this analysis and were determined to fight for their son’s life, so they took the case to England’s High Court. Justice Nicholas Francis sided with the doctors, ruling that Charlie had no chance of positive quality of life and should be removed from life support. His parents appealed the case to the Supreme Court, which also ruled with the doctors’ decision.
As Charlie’s parents protested the rulings and continued to insist that they should be allowed to fight for their son’s life however they could, they began making international news. World leaders weighed in, with both Pope Francis and U.S. President Donald Trump offering to help Charlie obtain treatment.
Dr. Michio Hirano, the U.S. doctor whose lab was developing the experimental treatment, was allowed to examine Charlie in mid-July amid rumors of new evidence in support of the treatment. His diagnosis was that the damage to Charlie’s brain and muscles had progressed past the point of no return and that the experimental treatment had no chance of helping him.
In a subsequent statement, Yates and Gard announced their decision that it was no longer in Charlie’s best interest to continue pursuing treatment, and that they would spend the child’s final moments with him in hospice care.
“One little boy has brought the world together,” they said, “and whatever people’s opinions are, no one can deny the impact our beautiful son has had on the world, and his legacy will never ever die. Charlie has had a greater impact on and touched more people in this world in his 11 months than many people do in a lifetime. We could not have more love and pride for our beautiful boy. His body, heart, and soul may soon be gone, but his spirit will live on for eternity, and he will make a difference to people’s lives for years to come.”
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