When advocating leads to innovation
When your family motto is “if we can put a man on the moon, we can do other things,” anything becomes possible.
Meet Nolen
Nolen has been a client of Holland Bloorview for most of his life. These days the 14-year-old is patiently awaiting the day that he can return to the basketball court. In fact, Nolen loves basketball so much that he broke his femur bone while running to check the Raptors score.
When Nolen isn’t playing or watching basketball, he’s talking NBA stats with his friends. “Talking numbers” as he calls it is a trait he most certainly got from his mom, Laura, who has a career as a venture capitalist who chases after innovation and more recently joined the Holland Bloorview Foundation’s Board of Directors.
The family was first introduced to Holland Bloorview when Nolen was two, after his parents had learned that while in utero he had a large middle cerebral artery (MCA) stroke and a Volkmann contracture that left him with no use of his right arm below the elbow. In the beginning Nolen received feeding, speech, physio, and occupational therapy at the hospital.
“Early intervention is key. It worked for Nolen. When he was younger, we didn’t know if he would walk or talk. It is because of awareness and early intervention and not running away but running toward [his diagnosis], and trying to help him, that it has all resulted in this stellar kid,” explains Laura.
Let’s just try
As Nolen got older, he began working with the Orthotics and Prosthetics (O&P) team. “We were told that his muscles wouldn’t work, his skin needed to rebuild, and that the arm would never be functional,” says Laura in explaining their decision to leave Nolen’s arm in a splint.
Laura is an innovator at heart, and so when it came to advocating for her son’s healthcare, she knew that more was possible. “In the past, when I had asked if we could do anything to make his arm more functional, they said no because the prosthetic needed some muscle to activate it.”
Reinventing the wheel
Once the prosthetic team realized there was enough muscle to activate a prosthetic, they decided to get creative and build something that would work for Nolen. The result? A myoelectric prosthetic that sits on top of his arm.
“They were very patient, putting all the myoelectric in the right spot so that he could open and close his hand, to go on to do things like open doors and drawers, and that kind of stuff. And Nolen being a basketball fan decided to get the Raptors Championship logo printed on the inside and basketball court on the outside,” details the proud mom.
Sandra Ramdial (retired clinical operator) went on to present the new prosthetic as a solution for Volkmann contractures around the world.
“This just shows the innovation that Holland Bloorview can do, for both the researchers there, and more importantly the families, when they are creative, innovative thinkers, that don’t take no for an answer,” says Laura.
Removing barriers and raising awareness
While Nolen says that disability isn’t an everyday conversation he has with his friends, “they know to help me with the stairs, sounds and transitions.” He says that one of his classmates in particular is “one of the most mature and responsible people in my class.”
“As a family I would say that we talk about disability inclusion a lot,” adds Laura “and notice things that preclude people with disability from doing things, whether it’s a restaurant without a ramp…”
“Or when there aren’t two rails,” chimes in Nolen.
Since Nolen was young Laura has been a proud advocate for building awareness about perinatal strokes. “We talk a lot about adults having strokes, but we don’t talk a lot about kids having stokes.” In fact, the incidence of perinatal stroke is 25 in every 100,00 births. “It’s common enough that if your child is not meeting developmental milestones, or if you have hand bias, that is maybe something you should speak with your doctor about.”
“When mostly young kids, or people who are my age, who don’t know about my stroke stare at my arm I wonder what’s going through their heads,” says Nolen, but he also knows that what people think about him isn’t what’s important. It’s his friends and family who are there for him (and the Raptors final score) that matters most.
