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'They save lives': More clinical trials coming to B.C. at new 'super hub'

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BC Children's Hospital will soon be able to run more clinical trials for drugs that could potentially save the lives of patients with hard-to-cure medical conditions – patients like Emmett Willms.

Today, Emmett is eight years old. But doctors never expected him to live this long.

“Your world is shattered when you receive a diagnosis like we received," said his father Josh Willms.

At five months old, Emmett was diagnosed with Spinal Muscular Atrophy (SMA).

“When I learned about SMA as a pediatric resident, children with SMA die within the first year," said Dr. Quynh Doan, the senior director with the BC Children's Hospital Research Institute.

"And Emmett is now having some time with his family … He’s a little boy who has had more years than we could have imagined," she added.

His longevity is thanks to Spinraza, a medication used to treat the disorder.

Emmett was enrolled in a clinical trial for the drug, which saved his life.

“With these clinical trials, there’s the opportunity for hope where there wasn’t holding hope before," said Willms.

Soon, more families in B.C. will be given that hope for their children, with more clinical trials expected to start up in the new year.

“We will be able to do them right here and maybe discover new treatments for conditions that currently don’t have any treatments," said Doan.

BC Children’s Hospital Foundation has raised $4.2 million to launch its Clinical Trials Super Hub, which will allow children in B.C. and the Yukon with severe illnesses to have access to the most innovative medications.

“Clinical trials do transform lives, they save lives, and we need more of them," said Doan.

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