Stevie
(19)
Ontario
| My name is Matt Stewart and this is my story about my big brother Steven. “Stevie Stewart” as he was known by many friends and family, was diagnosed with Duchenne muscular dystrophy at the age of 4.
From a young age, I can remember learning about Jesse’s Journey and what John and his son had done to raise awareness of this terrible disease. We would participate in the Jesse’s Journey Walk every year, even back when we would walk from St. Thomas to London, Ontario. I can remember how much of a role model John Davidson was/is for making this long trek every single day. |
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He was 4 years older than me so by the time I was old enough, I could remember him breaking bones a lot more easily than other kids around our age and this was when I started to learn about Duchenne.
| Stevie was in a wheelchair from about 10 years old for the rest of his life. I can remember growing up with the other kids from our neighbourhood who were all very supportive and inclusive of making it possible for my brother to be able to participate in “normal” activities that kids usually do. Whether it be playing road hockey, sledding or even baseball, our friends always found a way to include Stevie.
He had a love for music, video games and movies, which is what we spent a lot of time enjoying once we both got older. A lot of people asked what it was like having a brother with Duchenne muscular dystrophy, but to me, he was always just my big brother Steve. I never let this disease define him or limit him to trying things that he wanted to do. |
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Everyone always thought I took care of him when in reality, he took care of me. He showed me how to live every day, to take chances and really go after what I wanted in life, even at a young age. We fought like brothers, we bonded like brothers, and we will always be brothers.
Unfortunately, Stevie lost his battle with Duchenne’s at the very young age of 19. I was 15 at the time and can remember this being a very tough time in my life. It is still tough today but there is not a day that goes by that I don’t think about my big brother. He had an infectious smile and everyone who met him would remember who he was. He lived each day to the fullest and made light out of every tough situation he was put through throughout his life. There isn’t a day that went by where I remember my brother complaining about being in a wheelchair.
He was the strongest and most courageous person that I knew.
A lot of people ask how my family and I dealt with having someone living with Duchenne and the answer was simple. The love and support of everyone we knew and even people who we didn’t know always pushed us through the difficult days. We met so many great families who were in the same boat as us through Dinasour Club and Thames Valley Children’s Center as well as Jesse’s Journey. Having a support group is so important to be able to share how you are feeling as well as how to navigate the tough road of Duchenne.