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Meet Jalee Pelissier: a 20-year-old advocate with Muscular Dystrophy working to make her community better for people with disabilities

20-year-old Sudbury, Ontario native Jalee Pelissier was born with Muscular Dystrophy, a disorder that weakens a person’s muscles over time. Jalee has made it her mission to make a positive change for people with neuromuscular disorders and all disabilities. She is a spokesperson for the Sunshine Foundation of Canada, whose mission is to make dreams come true for kids with severe physical disabilities or life-threatening illnesses. Through her advocacy work, Jalee became an honorary firefighter for the work she has done to raise awareness in her hometown. Her mantra is “dream, strength, balance and fearless” inspired by her role model Tessa Virtue, which she wears inscribed on her ring and bracelet every day.

 

I first started advocating for people with neuromuscular disorders and other disabilities… when I was about 13 years old. It started by me doing a lot of research trying to find support in my community and I came across Muscular Dystrophy Canada. I then signed up for the walk-in North Bay and had then started making it my goal to raise awareness by being an advocate and doing research and fundraising for MDC. Over the last 5 years, I have raised over 20 thousand dollars. By doing all these things I have received huge honours such as becoming an honorary firefighter, ambassador for Muscular Dystrophy Canada, spokesperson for the Sunshine Foundation of Canada, winning the Craig Nobel independence award, The Sally Spence Award from the Children’s Treatment Centre and the Young Woman of Distinction Award from the YWCA.

I became interested in this work because… it is my passion to advocate for those with special needs. I believe it is important that all places should be barrier-free and inclusion should be automatic and not something that should be fought for.  As someone with a disability, I have faced a lot of barriers and rough patches and I want to put a stop for others in the future. I feel I have turned my disease into something beautiful and used it as a platform to make a difference. 

My proudest accomplishment is…  when the firefighters in my community made me honorary firefighter. I had been going around the station giving presentations on Muscular Dystrophy as that is their charity of choice and I wanted to put a face to the issue and explain how the money they raise will help individuals with neuromuscular disorders. I would tell them a little bit about my story, give them a description of MD and tell them what the mission of MDC is and where that money is going and how it helps. By the 3rd presentation, they made me an honorary firefighter and it was a huge honour.

My boldest move to date was… as a little girl, I was so shy and couldn’t talk to people or look people in the eye. Then a few years later I got up on stage in front of hundreds of people to share my story and that’s when everything changed and where it all started with my public speaking. It was completely out of my comfort zone but now it is my passion 

The next thing I would like to accomplish is… to continue my work on being an advocate for people with disabilities. I would love to continue my public speaking but not only in my hometown, but I would also love to start travelling in order to fulfil my quest and continue raising awareness for all disabilities.   

I surprise people when I tell them… that my life doesn’t suck, that it’s okay that I have Charcot Marie tooth, I live a full life that it doesn’t define me and I’m happy. I don’t let it drag me down. I can do anything anyone does, but I may just have to do it a little differently.

My best advice to others who like to become advocates in this area is… there are no limits. Always take the opportunity to share information and to educate others. Let your story be heard.

 

“I tell everyone to dream big and that dreams do come true. You will get through anything and you can have challenges but still live an incredible life.”

 

The person I look up to is… it’s hard to choose just one person, but I will give you three. Number one is my mom, I hope to grow up and be just like her. She is my inspiration and my guardian angel. Without her, it would’ve been a lot harder to overcome all my obstacles, but we jump over the hurdles together. My family means the world to me my dad and older brothers are like my best friends and we share everything together.  Second, he doesn’t know it but Niall Horan has helped me a lot through my journey and his music means everything to me. I had the privileged to meet him and he was the nicest person in the world. Lastly, Tessa Virtue is the perfect example of a woman of influence. I wear her ring every day with the words engraved “dream, strength, balance and fearless” and I live by those words. She has accomplished so many incredible things in her life, not only by winning the Olympics but by being an inspiration to women everywhere. 

The best advice I’ve been given is… never give up on your dreams because they will come true. No dream is ever too big. Never stop dreaming. 

My biggest setback was… when I had surgery every year in my 4 years of high school. It was tough as I missed a lot of school by going back and forth to Ottawa to see my specialist when I’m from Sudbury. Loads of travelling and seeing doctors while trying to heal. I had 3 full reconstructive surgeries on my feet and a hardware removal during my 4 years. 

I overcame it by… working hard and having the support from my family. I stayed positive and not only worked hard on my schoolwork, but also working hard to recover. I kept my spirits high and pushed myself to accomplish my goals. In the end, I graduated from high school with all my fellow students and even received 4 bursaries. 

I stay inspired by… seeing what all my hard work is doing. Seeing how many people it has helped and seeing what I’m doing is working and that I am making a difference. 

The most exciting thing about the work I do is… knowing that the things I have done will help multiple families and I always get a thrill after one of my presentations and I’m so happy. I have also met some incredible people along the way who I will stay in contact with forever. 

The future excites me because… in the future, the world will be more accessible and will become a barrier-free zone for all! I will work my hardest for that to happen. As for the neuromuscular community, the world will be more informative of it and will be more well known. I have lots of projects set for the future and I am excited to start them. 

The career I aspire to have is…to work with individuals with disabilities and help them not only physically but also emotionally by inspiring them to work their hardest and stay motivated. 

My next step is…to participate in the new MDC webinars and to share information and my experience with my follow MD warriors and inspire them to reach their goals.