A family frantically raced to raise $2 million to keep their baby alive, but she ended up getting the SMA treatment for free!
Lucy Van Doormaal is a beautiful baby girl who was born on April 1, 2020 in a Vancouver hospital. Everything seemed fine and perfectly normal until a couple weeks later when they realized that something was very wrong. Their baby girl was struggling with breathing, eating, and even moving around.
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“When we first took her home, we were in newborn bliss. Just absolutely in love with her. She was a great baby,” Laura Van Doormaal, Lucy's mother said. “But we started to realize her movement was declining. She had trouble breathing and eating. When she was five weeks old, she was diagnosed with spinal muscular atrophy.” Spinal muscular atrophy (SMA) is a genetic disease that will cause her muscles to break down. And this could possibly kill her by the tender age of just two years old.
Lucy's family came together and raised nearly $2 million for the one-time gene therapy treatment she needed to survive. But then she was selected for a free treatment through the Managed Access Program (MAP).
Baby Gets SMA Treatment To Save Her Life
"We were totally shocked. We didn't expect this outcome but we were just so happy because our single goal was providing the treatment to Lucy," expressed Laura.
She then shared, "this has been a traumatic experience, having to fight for treatment and put our life out there to fund it, so this is really a relief.” Lucy was diagnosed with Type 1 SMA, which is the most aggressive form of the disease. Her symptoms are so severe that she is barely able to swallow, crawl, or even breathe freely.
The only way that Lucy was going to make it was if she had this treatment. Thankfully, after the treatment, there were significant changes in Lucy's condition.
"We noticed an immediate difference. The biggest changes are her head control. Really quickly after the treatment, she was able to hold her head up which is something she’s never done before. She can sit with some support and hopefully one day she’ll crawl,” shared Laura.
The mom then added, “Maybe one day she’ll even walk. That’s really an optimistic dream, I know, but we like to have high expectations and we don’t want to hold her back.”
Family Stays Hopeful After Daughter’s Treatment
Even with the treatment, there is no guaranteed cure. But Lucy's family stays hopeful. While every case is different, there is a possibility in the future that Lucy will be able to outgrow her gastronomy tube. She also could possibly start to show signs of sitting, running, crawling, and possibly even walking.
“Now that we got the treatment we can focus on her recovery and her progress and enjoying her as a baby. But we also now have to face the grief we are feeling from the diagnosis and process what our new life looks like,” Laura shared. “These are all healthy things that needed to happen, so we definitely feel so much more hopeful about our future.”
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The money the family has raised through GoFundMe has been donated to other families that have infants who have SMA and some other charities. The rest of the money will be going to Lucy's medical bills. It truly is a miracle that this family was able to receive this treatment for free. We wish Lucy the best. And we pray that she is able to make a full recovery and lead a full life!
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h/t: CNN
Featured Image Credit: CNN / Scott Van Doormaal