Rebecca Van Fraassen is a 21-year-old OCAD student who loves painting and animation. She planned to travel to Florence for an art fellowship before COVID-19 intervened. After she graduates, Rebecca dreams of attending the New York Film Academy.
She may sound like your typical Toronto art student, but Rebecca’s day-to-day challenges and concerns are much different than those of her peers. That’s because Rebecca has spinal muscular atrophy (SMA), a rare and progressive neuromuscular disorder caused by a genetic mutation which she was diagnosed with at age two.
Overcoming the odds as a thriving artist
Fortunately, through recent innovations in care and careful management, Rebecca’s ability to function on a day-to-day basis is good and her quality of life is high.
“My doctor is great,” says Rebecca. “His goal is to improve my SMA symptoms so I can function as independently as possible. I’m grateful to him and am also one of the lucky ones who’s on treatment. This gives me a feeling of safety and also of excitement for the future.”
Dr. Aaron Izenberg, a neurologist at Sunnybrook Health Sciences Centre who treats adult SMA patients like Rebecca, helps them maintain functional independence and improve their overall quality of life.
“Intervening earlier in a degenerative disease means you’re catching it before it causes further deterioration,” says Dr. Izenberg. “One of the most important outcomes is maintenance and promotion of functional independence — both physical independence and also mental and emotional well-being.”
Thanks to the care of her doctor and access to therapy, Rebecca is able to preserve her functioning and can therefore continue to live independently and follow her dreams — and she’s well on her way to fulfilling them.
“The things that make us different are really the things that unite us, and I want to explore different facets of this through my art,” says Rebecca. “I really want to make a film that means something to people, and that speaks on behalf of people with disabilities.”
Rebecca wants other adult Canadians living with SMA to have equal opportunity for disease improvement so they can also live up to their potential.
This article was made possible with unrestricted support from Biogen Canada.