‘We can’t do this on our own:’ Vancouver-area family hoping to fund $3M treatment for two-month-old daughter

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VANCOUVER (NEWS 1130) — A Vancouver family is hoping to help get their infant daughter to her second birthday.

“Quicker than we were even able to finalize her name, we noticed something wasn’t quite right with our daughter Lucy,” says her father Scott Van Doormaal.

On a GoFundMe page he says Lucy was diagnosed with Spinal Muscular Atrophy (SMA) type 1 on May 5.

While Van Doormaal notes it is a relatively common rare genetic disorder, the type Lucy has been diagnosed with is incredibly aggressive and he says if left untreated, she won’t likely make it to her second birthday.

The disorder attacks her motor neurons and reduces her ability to swallow, sit, crawl, and control her head and neck.

The family says there are a couple of treatments available to Lucy, including Zolgensma, a new gene therapy that Van Doormaal says has recently been submitted for approval to Health Canada.

But there’s a problem.

“We just found out that Lucy is a good candidate [to receive Zolgensma]. Zolgensma could save Lucy’s life. Getting approval for the drug is only half the battle, this treatment not yet covered by Canadian Health Care and costs $3Million CAD,” according to the parents.

Along with the fundraiser, the family has started a petition to get the drug approved by Health Canada.

“I have to admit, the experience of setting up this [GoFundMe] page is an emotional one. This is admitting to ourselves that we can’t do this on our own, and I guess we’ll have to come to terms with that at some point down the road,” Van Doormaal says.

“Our primary responsibility right now is caring for Lucy. These first few months are critical for building the best foundation for her to fight this disorder and will undoubtedly lead to a healthier, longer life.”

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