Fundraising efforts pay off as baby Lucy gets ready for gene therapy drug

Aug 10 2020, 3:19 pm

A Vancouver family celebrated some good news about their daughter’s health this weekend.

Baby Lucy will be getting an expensive drug to treat her rare disorder after her parents’ fundraising efforts raised nearly $2.5 million.

Lucy was born with Spinal Muscular Atrophy, a rare neurodegenerative disorder that would have likely killed her by her second birthday.

Her parents Laura and Scott Van Doormaal began an online fundraiser after her diagnosis to cobble together $3 million to pay for a new gene therapy treatment that’s not yet approved in Canada.

After months of fundraising, the family is finally close enough to their goal to import the drug from the US.

“Although this process has been extremely stressful and vulnerable for us, the support of this community has been uplifting and we’re thankful for all of your efforts,” the Van Doormaals wrote in a GoFundMe page update. “We hope you are as excited about this news as we are.”

Lucy will likely get the treatment in September, although the exact date hasn’t been finalized. The therapy is called Zolgensma, and it will replace Lucy’s defective gene that causes her disorder with a working copy.

Lucy’s plight made headlines around Metro Vancouver, and caught the attention of actor Ryan Reynolds who donated to the fundraiser. Lucy’s campaign is the largest Canadian GoFundMe of 2020 so far, according to a company spokesperson.

The news comes on the same weekend that a Surrey family whose son has the same disorder also raised enough money to pay for his treatment. Baby Aryan should also be getting treatment soon.

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