Frustrated and in pain, the Van Doormaal family is leaving no stone unturned to save their 3-month-old’s life even if it takes something they don’t have: $3 million dollars.
Guelph native Scott Van Doormaal and Elmira native Laura Van Doormaal, who now reside in Vancouver, welcomed their baby girl Lucy on April 1.
While Lucy was born healthy, by five-weeks old, she was diagnosed with SMA1, a genetic neuromuscular disorder that impacts nerve cells in charge of volunteer muscle movement as a result of a missing gene.
There is a drug called Zolgensma that replaces the function of the missing gene with a copy of a human gene to help neuron cells function correctly, but it comes at a high price: the one-time Zolgensma 60-minute treatment costs $3 million.
“It’s hard to put a price tag on a baby’s life. And that’s where it’s extremely hard for us to digest this as parents,” said Lucy’s father Scott.
“They have put a price tag on the quality of our daughter’s life and the life expectancy of our daughter and that’s been extremely hard for us to wrap our heads around.”
Scott was a national-level swimmer for many years with the Guelph Marlins, University of Guelph and Athletic Canada. Laura, formerly Kendall, was also a star swimmer with the U of G Gryphons.
Zolgensma is not approved by Health Canada but has been approved by the U.S. Food and Drug Administration.
“That could take up to six months,” said Scott about waiting for Health Canada to approve the drug, “and we know with this disorder, every day counts.
“The longer you wait, the more damage can be done that’s irreversible. There is no drug out there that can regrow or regain the neurons that are dead,” he said.
Currently, Lucy is unable to move, is fed through a tube, requires a BiPAP machine to breathe at night and goes through daily physiotherapy.
If left untreated, Scott says Lucy won’t make it to her second birthday and so the family is heavily relying on community support.
On May 10, the Van Doormaals created a GoFundMe page that already raised over $380,000. The family has also regularly been sharing updates on Twitter and Instagram.
“At one end you’re like oh my goodness. that‘s $300,000. That’s a house. That’s what we mortgage our house for and yet we’re only 10 per cent there. It’s just another level of dollar figure that we just don’t operate in,” said Van Doormaal.
He said he’s also been incredibly grateful for Lucy’s grandmother and U.S nurse Sandra Kendall who took early retirement to be there for her grandchild when she was born and has helped every step of the way.
Lucy is currently taking Health Canada-approved Spinraza which is provincially covered for infants in B.C. Scott said while it is helping, it’s not treating the root cause like Zolgensma will.
“They’re not calling it a cure but right now its the closest thing that we can hang our hats on,” he said.
When he first set up the GoFundMe page, it was to raise $5,000 to support secondary and tertiary lifestyle adaptions such as purchasing a custom wheelchair, adapting to different furniture and regularly offering physiotherapy for their baby.
When Lucy officially became a candidate for Zolgensma, her parents went on the platform and said Lucy is a candidate for this new drug, the time is now and getting the drug can only be done with help.
Scott said for those who cannot donate, sharing the information is a way to amplify their voice which doesn’t cost them anything more than their time.
“It’s the power of plenty,” he said. “That’s the call to action that we want to spread throughout the nation.”
When he and Laura first heard the price of the drug, it was difficult to even register in their minds as a possibility.
“As that sinks in and we start crunching numbers of how many people you need to reach and we start gaining some hope talking to our friends and putting the message out there.
“It’s our daughter, we’re not going to not try ... We still have a long road to go. I’m definitely optimistic that we will get there.”
