I was diagnosed when I was two years old, so I can’t remember what that was like. All I know is it was very tough on my parents, and my whole family came together to help them deal with the news. One of the big steps they took to cope with the news was to connect with Defeat Duchenne Canada. I have been part of the ‘family of families’ at Defeat Duchenne Canada as long as I can remember. It’s been totally transformative in terms of how I deal with my disease and everything that goes along with it.
In and of itself, managing Duchenne is very stressful and hectic. My care roster includes a bone doctor, neurologist, cardiologist and family doctor – not to mention the researchers I work with during the clinical trials I take part in.
Participating in trials can ask a lot of the families involved. For my family in particular, at the start, we were driving to London every week for my injection. I will be honest: the injections are tough. Especially when I was young, I can remember screaming when they went in. However, over time, the discomfort and complexity of our commitments have changed.
A big reason behind these positive changes has been the treatment improvements made by researchers. While a three-hour drive and IV once a month is still disruptive, when you realize the solution is working and you feel stronger, it is absolutely amazing. Not only because you experience the benefits first-hand, but because you know you are supporting those researchers to make huge improvements for countless other people.
I deal with stuff someone without a disability would never even think of. Every day, I need to stretch, do breathing exercises and constantly ask for help doing things like having a shower or getting up off the couch. When most people fall, they can laugh it off and get right back up, but that’s not how it works for me: One time, I slipped and fell at a friend’s house and broke my femur. Year after year, my bones get weaker, and I am more at-risk for these types of thing happening, which may totally change how I live and get around.
Having a disability definitely teaches you to be more empathetic and recognize the stigma and limitations that surround being differently-abled. Not only do I have to face the slow drain of my strength and the loss of the abilities I had maybe not even five years ago, but a curb or set of steps may mean the difference between whether or not I can enjoy a normal dinner out with my friends.
But, none of this means I live without hope. The trials you help support are a big part of the reason I am reaching milestones that, previously, were totally out of reach for someone with Duchenne.
The hope you fund moves me forward – through every difficult part of my trials and every painful or inconvenient aspect of my days.
Thanks to you, I have so much to look forward to. Your contributions to our cause have helped me realize there are people out there who do not care about my Duchenne differences – except in that they want to uplift and celebrate how far I’ve come.
What I want to say to the young boys, who have just been told they are like me, do not give up: there are scientific advancements moving forward that may change your life. As we wait for those new approaches, I promise to use my voice to influence the solutions that will help make your life a little easier and a little more hopeful.