We didn’t know that with treatment her story could be different.
Lucy should have received treatment before symptoms appeared and thanks to the advocacy of MDC, other babies won’t have to wait.Laura Van Doormaal
Imagine seeing your newborn’s health rapidly decline at three weeks of age. You had been watching them kick, cry, suck their thumb and feed wonderfully, but now you start to notice weakness in their arms and legs. Then, two weeks later, your perfectly healthy, full-term baby is struggling to feed and breathe, and you are receiving a diagnosis that includes the heart crushing words “rarely survive past two years”.
Laura and Scott Van Doormaal do not have to imagine this scenario. This is exactly what they went through when, at five weeks old, their daughter Lucy was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
Lucy began a treatment for SMA immediately and then at five months old, on September 9, 2020, she was selected to receive a new gene therapy. For the Van Doormaal family, this was a new start.
All of us at Muscular Dystrophy Canada (MDC) are grateful that Lucy had the opportunity for a new beginning, and for her medical team that made it possible. But we know not everyone has this experience.
It is because of generous donors like you that we’re able to advocate for earlier diagnoses of neuromuscular disorders across Canada, fund more research to improve treatment options and search for cures. We’re making progress, but there is so much more to do.
In a neuromuscular disorder like SMA, where time is of the essence, early diagnosis and prompt access to treatments are critical to achieving the best possible outcomes. Unfortunately, this is not the reality for most Canadians….yet.
Please consider making a gift today. Your donation will ensure that people like Lucy receive earlier diagnoses, and have access to important programs and services that can support their emotional, mental and physical health.
Today, although there is still a long road ahead, Lucy is thriving. At almost two years old, Lucy has started standing with support, communicating more and showing off her love of dancing. She has regained her ability to eat, and truly loves mealtime. Laura told us that:
“Early diagnosis and access to treatment has the biggest impact on the future for families who experience neuromuscular disorders like SMA. I know this is something MDC is passionate about.”
We know that access to treatment before symptoms appear can change a life. Together, we can ensure that screening and diagnoses are available as early as possible, even before 5 weeks of age. That’s why I’m asking you to make a donation today. Your support will mean a new beginning for people across the country.
You can help save lives.
I am grateful to each donor who has invested in our shared goals. You have already made a difference to our community. Thank you for supporting our important work and for your continued partnership.
Sincerely,
Stacey Lintern
Chief Executive Officer
PS. Your gift today will help ensure people diagnosed with neuromuscular disorders receive the treatment they need as soon as possible, before it’s too late.
PPS. Making your donation is easy. Simply fill out the enclosed reply form and return it in the reply envelope, or make your gift online at muscle.ca/give. You can also call 1-800-567-2873 to make a gift by phone.
