You CAN drive with Duchenne Muscular Dystrophy (DMD)!
Being able to drive is a dream that means a lot to any teenager. Shaan Lail is living that dream. Even though he has Duchenne Muscular Dystrophy (DMD), Shaan will soon be driving his own modified SUV. Shaan is the first Canadian to drive with a state-of-the-art Swiss electronic driving system called Joysteer. This new technology has given more independence to people with disabilities.
Since Shaan was little, he’s always been really into cars, so being able to drive his own vehicle is a real dream come true for him.
“I didn’t wanted DMD to steal away the pleasure of driving,” his mother told me right away. “You see, this disease takes so much away from these boys and young men. Ever since he was very small, Shan’s always talked about cars, cars, cars and more cars… I wanted to do everything in my power to make sure this dream wasn’t one of the things he was robbed of.
Shaan is doing great in his life. At 19 years old, he’s a student at the University of British Columbia (UBC). His long-term professional dream is to become a lawyer.If you’re familiar with DMD, you know that it is a degenerative and progressive life-limiting disease that relentlessly steals away muscle strength. But, somehow, Shaan is defying DMD.
Behind every child with Duchenne Muscular Dystrophy (DMD), there is always a strong parent.
I asked Shaan’s mother, Vee, how she manages to keep her son motivated to pursue his dreams. What she said really touched me.
“Ever since Shaan was small whenever he was upset about something he couldn’t do, I tried to teach him to always focus on his abilities rather than his disabilities. I used to demonstrate by write the word DISABILITY and draw a big X over the letters DIS to reveal the word ABILITY,” Vee told me. I believe and I taught Shaan that one cannot control what life throws at you – you just have to do the best you can.”
Even with all of Shaan’s positive energy, Vee tells me that life with DMD is never easy. It takes a lot of energy to get around campus and keep up with his courses. But driving a car is a great milestone for Shaan. How accessible is the state-of-the-art Swiss electronic driving system?
How accessible is the state-of-the-art Swiss electronic driving system?
Unfortunately, right now, it’s expensive. Vehicle conversion or new vehicles start at $40,000, and used vans may cost about $15,000 or more. The driving system is another at least $70,000 more. Even though the technology is pricey, at least the possibility is there. Hopefully, prices will drop as more and more people with disabilities outfit their cars. And, families can always try crowdfunding as an option.
Congratulations to Shaan’s family for getting this technology to Canada! It’s very encouraging for the DMD community.
Watch this video for more information.
More about Joysteer here.
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