B.C. family who raised millions for their child’s rare drug pays it forward

A Vancouver family living with a rare illness is still in shock over a surprise donation from a family of strangers.

“I woke up with $10,000 in my account from someone I’ve never met before, and they didn’t want anything back for it,” Cherie Ehlert told Global News.

Ehlert’s 11-year-old daughter Charlie-Anne has spinal muscular atrophy type-1, a condition that causes muscular weakness and atrophy.

Charlie-Anne takes a drug called Spinraza to help with the symptoms, and the family has been active in raising money for SMA research and blogging about it.

It was that activism that put them on the radar of another family battling SMA, and which led to the donation.

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Harpreet and Gaganpreet Deol’s one-year-old son Aryan also has SMA, but is young enough for a gene therapy that can radically improve his condition.

Zolgensma is also the most expensive drug in the world, with a price tag of around $2.8 million. The Deols launched an online fundraiser, and with the help of a Surrey-born Bollywood star exceeded their goal.

That’s when they turned to other SMA families looking to help.

Ehlert said she thought she was potentially facing a scammer when a stranger reached out offering a donation and asking for her banking information.

The Deols said they wanted to donate to Cure SMA, the initiative Ehlert and her daughter have been involved with, but that they wanted to make a direct donation to the family as well to help with the added costs of living with the condition.

“I said, ‘Is this for real?'” she said.

Ehlert did some research and quickly discovered the Deols were for real, and facing some of the same challenges her family was.

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“I woke up the next day and there was $10,000 in my bank account,” she said.

“I was like, ‘What?’ And I just froze. I ran out to the living room, and my daughter was in school, on Facetime on her app with her nurse, and I said, ‘Pause that right now’ and I jumped up and down.”

Charlie-Anne has already started shopping for a new computer. Ehlert, who is out of work due to COVID-19, said the funds will also help cover mobility equipment and ensure that Christmas 2020 is a merry one.

And Charlie-Anne and her mom aren’t the only ones who will benefit. The Deols have begun sharing the donations with other SMA families as well.

“I started going through their Instagram, and I see they’re doing this for lots of families,” Ehlert said. “This is amazing, they’re changing lives.

“I don’t know what to say. How do you say thank you for that?”