Ollie seems to have found his calling. His biggest joy is making other people laugh. He is full of life and determined to live it “his way,” even if it means working harder at everything!
Ollie has a neuromuscular disease called SMARD that affects his muscles, including the muscles used for breathing. He has a trach and a ventilator 24/7. He cannot walk on his own or stand without something to hold onto. Still, Ollie is a very active 3-year-old, and has found his own ways of doing things. He uses a gait trainer to walk short distances, and scoots around to get from place to place. He’s become very efficient at his own style of movement. He scoots on his bottom to get around inside, but outside that is harder to do efficiently and safely.
Ollie’s family loves being outdoors. To include Ollie on walks and bike rides, they put him in a bike trailer – but Ollie really wants to ride a big kid bike like his sister. And adaptive bike would allow Ollie to truly participate along with his family and friends, and it would encourage his motivation to keep moving!
An important message from his family:
“We (his family) are used to the way Ollie moves, as well as the machines that help him breathe and keep his airway clear. Understandably, other people aren’t. We love when they ask questions and say hi to him! That’s not typically what happens; many people stare as they walk past or ignore their kid’s curious glances in Ollie’s direction. Seeing him do regular kid things like swing, ride a bike, or go down the slide helps people see the kid behind the disease and machines. Having inclusive playgrounds, bikes, cars, rides, etc. are so important in making that happen, because as hard as we try we can’t always make regular equipment work for him. And seeing the smile on Ollie’s face when he gets to go on a ride like all the other kids makes everything worth it.”
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