The story of a B.C. baby battling spinal muscular atrophy, also known as SMA, has now gone global.
Lucy Van Doormaal was born April 1, 2020.
She was born perfectly healthy, but at around two weeks old, her newborn movements started to change.
“From there, she basically completely stopped being able to move her limbs and (was) struggling to breathe,” mom Laura said.
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The family later learned Lucy had been born without the SMN1 gene and was eventually diagnosed with SMA, which results in the loss of muscle movement.
The family launched a GoFundMe campaign to raise money for Lucy’s treatment but they need $3 million for the drug called Zolgensma — described as one of the priciest drugs in the world.
It has not yet been approved in Canada, only the United States, but the Van Doormaals do not have time to wait.
They raised over 1$ million over a few days, but after Lucy’s story appeared on CNN, the GoFundMe is now almost at $1.7 million.
Donations are coming in from all over the world.
“They’re coming in so fast and we’re trying to keep up,” dad Scott said. “We’re trying to spend an hour at the end of the day to really digest what has come through.
“It’s clear there’s an army behind her and everyone is getting behind Lucy and we’re so amazed and overwhelmed with the amout of support.”
Without Zolgensma, Lucy’s life expectancy could be as little as two years.
Anyone wishing to help can donate to the GoFundMe for Lucy’s treatment and share her story with others.
“It’s only a matter of time,” Scott said. “I know we’ll get there.”
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