The soft-spoken, well-mannered nature of my teenage son conceals the determined advocate he has become. Diagnosed with Multiminicore Myopathy as an infant, Uwais was never supposed to crawl or walk or talk. He is now a computer whiz with dreams of driving a motorcycle.
The disorder affects every muscle, leaving his body uncooperative and weakened. His muscles will not regrow. He has difficulty lifting objects such as school books. His eyes are fixed and his lack of peripheral vision increases his chances of falling. Sometimes respiratory machines assist his lungs. Eating, dressing or getting around can be challenging.
Since Uwais was 6 months old, Grandview worked with pediatricians, neurologists and community-based groups to propel him to where he is today. He began speaking at one and through lots of occupational and physiotherapy, started walking at three. He continues to amaze his doctors.
I think back to a doctor’s visit when Uwais was little. The doctor was stunned when he walked to the examining table and climbed up by himself. I still get emotional thinking about it. Throughout his early years including his time in JK and SK at Campbell Children’s School in Oshawa, the Grandview team worked with Uwais on his fine-motor skills and so much more. Before transitioning to grade one, Grandview ensured all physical and emotional supports were ready.
From day one Grandview encouraged Uwais to push himself, to be his own advocate and use his voice. He always persevered. He taught people to see things differently. When asked at his new school why he was in a wheelchair, he would just tell them. He had no qualms.
Through Grandview’s therapeutic recreation groups such as Adventures in ParaSport, he participated in swimming, soccer and even karate. Now Grandview is suggesting horseback riding! He also enjoyed cooking, computer groups and a camping retreat. Working toward his independence, Uwais is transitioning to the Ablilities Centre in Whitby to work on weight training. He even took a local bus tour to learn skills like grocery shopping.
Now in his first year of high school, Grandview guided his transition again. He is set on achieving 80% in all subjects. Also an avid sports enthusiast, he uses his wheelchair to play goalie during hockey games. He is delighted that everyone wants him on their team!
We still see occupational and physiotherapists. As Uwais grows everything changes and we don’t know how he’ll adapt. We’re lucky to have such a fantastic place as Grandview in Durham Region. They treat you as family. Although, now we hear of families having to wait.
Whether riding a bicycle or taking another milestone walk across the stage at his grade eight graduation, Uwais will find his way. His t-shirt, quoting the late Muhammad Ali, says it all. “Impossible is Not a fact. It’s an Opinion.”