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CrystalCrystal Rondeau and her family are a cornerstone of the Muscular Dystrophy Canada community in Winnipeg, Manitoba. She is 25 years old, and is living with Spinal Muscular Atrophy Type 2.

Over the years, Crystal has not only lived with this severe muscle weakening and wasting condition, but has also fought cancer. She  began to use her story to help others understand disability, and disspell disability stereotypes.

Crystal’s presentations began when she was 16 years old, when a teacher asked her to make a slideshow about her life. At this point, Crystal had been in the hospital after undergoing a tracheotomy and described herself as going through depression and very suicidal. The slideshow provided an opportunity for distraction, so she got to work on her laptop and started typing.

‘I Have a Brain That Works… In a Body That Doesn’t.’

Now after almost 10 years of sharing her life and experiences with classmates, school groups, business and community groups, Crystal has it down to a science. She gives background information on what muscular dystrophy is, and the specifics of SMA and its varying types. Crystal paints a picture of what it is like to receive a diagnosis, prognosis, surgeries, and symptoms.

After discussing symptoms with the group, Crystal leads the group in a breathing exercise to simulate the difficulties those affected by muscular dystrophy have with breathing. Attendees breathe through a straw, and then evaluate how it felt. They then move on to breathing through the straw while doing jumping jacks, and re-evaluate. “The impact of the exercise is real. You can see it on their faces. It really shows them how it is for me to breathe,” she says. “The reality of the disorder hits them – that even breathing is such a struggle.”

Once the exercise is complete, Crystal turns to sharing personal stories about living with SMA, her cancer, and issues with being bullied.

“I do my best to explain exactly how SMA works; I explain the genetic in terms that are simple. I also tell them everything I need help with, right down to having someone help shave me. In regards to cancer, I do my best to show them how it changes your outlook on life. I witnessed so many children die and when they realize that it really happens, they take the time to think about it. As for bullying, I tell them exactly what has been said to me, and explain how it specifically  affected me. However, I also express that because of the bullying and challenges I’ve faced, I am a stronger person. “

She shows them photos, and tells attendees her dreams and goals – then it’s question period. Crystal does not shy away from anything asked. “Honestly, it’s my favourite part of the presentation. I find it very interesting to hear what they are thinking, and what they want to learn more about.”

“Doing the presentations is very fulfilling for me, it makes me happy. You can tell that they’re really impacted by my life and have enjoyed me being there,” says Crystal.

“I hope that people leave with a different view on life, and a different perspective on people who live with disabilities.”

If you would like to get in contact with Crystal, please contact our Winnipeg Community Office at 204-233-0022 ext. 2 or at averill.stephenson@muscle.ca

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