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Claire Chretien Claire Chretien Follow Claire

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Charlie Gard’s mom reflects on his life: He was ‘absolutely perfect’

Claire Chretien Claire Chretien Follow Claire

ENGLAND, August 16, 2017 (LifeSiteNews) – In a new column, Charlie Gard's mother Connie Yates recounted the agony she endured as she fought for her son's life. 

"I was a carer for severely disabled people, so I knew doctors could be wrong" when they said there was no hope for Charlie, she wrote for NowToLove.com.

Charlie, believed to be only the 16th person in the world with a rare mitchondrial disease, would react when his parents touched him or tickled his feet, Connie wrote.

"Because of Charlie's condition, which meant he couldn't move, it was impossible to tell the extent of his brain damage. Chris and I didn't believe he was as badly affected as doctors said," she recalled. "We could soothe him to sleep by stroking his hair and tickle his feet to wake him up. He at least deserved the opportunity to have treatment."

But Great Ormond Street Hospital (GOSH) fought in court to be able to withdraw Charlie's life support against his parents' wishes. His parents raised more than $1.5 million to bring him to the U.S. for experimental treatment. 

An English court's initial ruling in GOSH's favor caused Charlie's father, Chris, to "let out a howl," Connie wrote. "I was so upset I had to be helped out of the court."

They then took their case to the European Court of Human Rights, which ruled against them.

After the case went back to British courts and garnered international attention, Chris and Connie eventually withdrew their request to transfer Charlie elsewhere for experimental treatment. GOSH's stalling had eliminated his chances of getting better.

Charlie died on July 28, 2017 at a hospice, just a week before his first birthday. GOSH prevented Chris and Connie from being able to bring Charlie home to spend his final hours.

In her column, Connie revealed that one woman gave her life savings of $80,000 to try to help Charlie.

She and Chris were initially distraught over how expensive treatment for Charlie would be, but it quickly became clear people around the world were willing to help.

"I set up a GoFundMe page, and I couldn't believe it when our request for help went viral," she wrote.

This week, GoFundMe announced it was donating $13,000 to the newly-formed Charlie Gard Foundation, which will help other sick kids and advocate for parental rights.

The first time she held Charlie, Connie wrote, "it was love at first sight."

"He was absolutely perfect" and holding him made it seem "crazy to think that at one point I hadn't wanted kids."

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