Seven-month-old Lucy Van Doormaal hasn’t had an easy life so far, but she seems to have a bit of luck on her side.
When Lucy was diagnosed with the rare and fatal genetic disorder spinal muscular atrophy (SMA) at five weeks old, her parents turned to the internet to help them afford a life-saving infusion with a $2 million price tag. Lucy’s story — and her beautiful blue eyes — went viral, and the family raised more than $2.5 million on the crowd-sourcing platform GoFundMe. Then, Lucy was randomly selected by the drug maker to get treatment for free.
“I think we are still a bit in shock,” Lucy’s parents, Scott and Laura Van Doormaal wrote in an August 12 update shared on GoFundMe and Instagram.
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Update! Thank you everyone for giving us space to sit with this new exciting reality that Lucy is getting the treatment she needs! I think we are still a bit in shock. Now that we have had a moment to breath we want to share with you how Lucy is accessing this treatment. In an incredible turn of events, we found out Lucy was randomly selected by the drug company, Novartis/ AveXis, to receive treatment through the managed access program. This program is a world wide lottery and although, like other parents we entered Lucy into it, we never expected her to be selected. Like I said we are in shock! Right now we don’t know exactly what this means for the funds we have raised. (and probably won’t be able to make those decisions until Lucy has received treatment) That being said our goal and intention with the funds is to support the SMA community. If you have any specific questions regarding your donation, please reach out and we promise to keep you updated. We truly believe Lucy would not be receiving this treatment without the amazing support from all of you. Every personal story, kind message and fundraising effort gave us hope and strength to keep fighting for Lucy. We are so thankful for the awareness this has brought to SMA and are dedicated to continue to advocate for this community We are very hopeful for Lucy’s future and we can’t wait to share her miracles with you #lifeforlucy #sma1 #curesma #zolgensma #allthehappytears
The drug maker, Novartis Gene Therapies, launched a Managed Access Program this year. The program is meant to help babies get treatment in counties where the drug, Zolgensma, isn’t yet approved for use. That includes Canada, where Lucy lives.
On Sept. 9, Lucy was given the infusion at British Columbia Children’s Hospital. Right away, her parents noticed that she was making improvements.
“Lucy lifted her head for the first time ( a tiny amount from an inclined position) during tummy time yesterday,” her parents wrote in a Sept 24 Instagram post. “This felt huge (and the smile was just the cherry on top).”
While Zolgensma is a promising treatment, it won’t completely cure Lucy of SMA. It’s not clear whether she’ll be able to walk to feed independently one day. But for now, her parents are thrilled to know that her life expectancy has been vastly expanded and her future is full of possibilities.
“We like to have high expectations and we don’t want to hold her back,” her mother told CNN.
Although the Van Doormaals had a great outcome — getting the treatment that they needed for Lucy — the experience was a painful one, Laura told CNN.
“This has been a traumatic experience, having to fight for treatment and put our life out there to fund it,” she said.
On October 10, Laura shared a very honest Instagram post, with a picture of Lucy as a newborn.
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“You are so strong” A phrase I have heard many times since Lucy’s diagnosis but not one I have felt to be accurate. When she was diagnosed, my mental health crumbled. This photo was taken 2 days after we got the news. I felt guilt, fear, jealousy and grief. I broke down and entered an extremely dark and painful place. As an extroverted person I am not sure my depression was always obvious from the outside. But those who really know me, could tell I was not doing well. I was not myself, I felt broken and was unable to picture a day when I would feel differently I felt guilty about not being able to support others who were also having a hard time, about accepting or needing help. Guilt about not being a better mother, a better partner and for letting down Lucy and my family. Thankfully through this journey I have not been alone. Despite covid isolation, the support I have received from family and friends (and complete strangers) has been immense. I have also been seeing a grief counsellor and a postpartum psychiatrist who are helping me find the path forward. Slowly i found ways to cope and I have gotten to a better place. I still have set backs with my mental health, but I think I am better equipped to deal with them. I share all of this because I don’t want anyone to think we have made this journey alone. No one is meant to go through lifes challenges alone. I know it has not alway been easy to support me; grief has not brought out my best qualities. But I’m so thankful to everyone who has tried. Now when I hear the phrase “you are so strong” I know for me it really means “my community is strong so that I don’t always have to be“ Today is #worldmentalhealthday. Please check in on your friends who are struggling. Everyone needs help sometimes. #mentalhealthawareness #therapy #sma1 #postpartumdepression #grief
“When she was diagnosed, my mental health crumbled,” she wrote. “This photo was taken 2 days after we got the news. I felt guilt, fear, jealousy and grief. I broke down and entered an extremely dark and painful place. As an extroverted person I am not sure my depression was always obvious from the outside. But those who really know me, could tell I was not doing well. I was not myself, I felt broken and was unable to picture a day when I would feel differently.”
She continued, “I felt guilty about not being able to support others who were also having a hard time, about accepting or needing help. Guilt about not being a better mother, a better partner and for letting down Lucy and my family.”
Laura shared that she started seeing a grief counsellor and a postpartum psychiatrist to help her cope.
“I share all of this because I don’t want anyone to think we have made this journey alone. No one is meant to go through lifes challenges alone,” she wrote.
The funds that were raised for Lucy’s care will be donated to 7 other Canadian babies who have the same condition. The Van Doormaals will also make a donation to British Columbia Children’s Hospital and Muscular Dystrophy Canada, while keeping some of the money for Lucy’s future care.
Now that the scramble for treatment is behind them, the Van Doormaals are focused on healing as a family and meeting Lucy’s needs.
“She is showing us everyday how tough she can be,” they wrote on GoFundMe. “We know it will be a long road from here but we are so encouraged by her progress.”
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Reviewed by Chaunie Brusie, RN, BSN…