Kids and adults alike love to ride bikes. Exercise, travel and autonomy sprout from the experience. For a person with SMA, the experience easily can elude them. Their legs aren’t strong enough to move the pedals, their balance isn’t sufficient to master the task and their stamina leaves something to be desired.
While at Ella’s PT/OT session, I sat quietly in a chair in the hallway while Ella worked with her therapists. No sooner than I had gotten comfortable did I hear Ella’s voice behind me. I turned in my chair to see her on a large, three-wheeled bike. Her PT was pushing her from behind, but with only one or two fingers. Ella’s feet were strapped into adapted pedals and she was steering, pedaling and riding!
The look on her face was priceless, as a smile ran across her face seemingly never to leave. Her legs looked strong, and her confidence was high. She kept saying, “I want one of these at home!” The therapist told me they had received a grant and put children’s’ names onto a list for them to receive one of these bikes. Ella’s name was among them. The grant was established because of an injury sustained by an 11-year-old boy named Jonathon Goers.
Our therapist gave us this information about the grant:
“Jonathon Goers loved bicycling. When he was 11 years old, he was biking to soccer practice when he was struck by a train and sustained massive brain trauma, leaving him with life-long physical and cognitive disabilities.
The Jonathon Goers Adapted Bike Program was established to share Jonathon’s joy of biking with children who have developmental delays or disabilities and might not otherwise have the opportunity to ride or own a bicycle. The program will provide the child with an adapted bicycle free of charge. Any family of a child with a developmental delay or disability is eligible to apply to the program.
The only caveat of the program is that the bicycle is returned to Easter Seals DuPage & Fox Valley if the child outgrows or no longer uses the bike. This will allow another child to enjoy the benefits of biking.”
Although SMA can wreak havoc on the childhood of a person, there seem to be people out there who are constantly thinking of ways to make life easier for people afflicted with this disease. There are people and companies willing to try experimental means to improve the quality of life for kids with SMA and other diseases. It’s a wonderful thing to witness.
Maybe next spring, Ella will be chugging alongside her brother and sister in her new adapted bike, feeling the autonomy and freedom that comes with a simple bike ride.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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