The Tomesch Family Encourages Others To Live Their Lives
Tomesch family encourages others to live their best life and pursue their dreams
“When our son Jason was just two and a half years old he was diagnosed with Duchenne Muscular Dystrophy, a degenerative disease where your muscles continually deteriorate and daily tasks become more difficult as your body weakens,” says Jason’s mother, Sue.
Due to the progressive nature of neuromuscular disorders, families often experience a lot of bad news and have to overcome new challenges regularly. Five years ago, Jason was critically ill with aspiration pneumonia and spent six months in the hospital. He cannot eat, drink or talk loudly as he has a trache and feeding tube. He also relies on oxygen and a ventilator to breathe.
These circumstances do not define him as a person. Jason is now 25 and has a very important message to share with others who face similar challenges: Don’t be afraid to live.
“We so often focus on the negatives, the things we can’t do, the fear. But there is so much more than that. Get out there and live the life you want,” says Jason. “I still do so many of the things that I love and I want to encourage other individuals with neuromuscular disorders to continue to pursue their passions as well!”
“What we love about working with Muscular Dystrophy Canada is that they really want to help you have the best life that you can! And they provide you with the information and resources to do that,” says Jason.
“Connecting with others who have similar experiences or have faced similar challenges has been very helpful and inspiring for me. I hope others who are facing a new diagnosis or are struggling will reach out to these communities for support and friendship,” says Jason.
“Muscular Dystrophy Canada has helped us with many things since my diagnosis but specifically over the last five years. They helped us purchase a much needed track lift and other vital equipment, they helped us advocate for coverage that we weren’t receiving. They have supported us by providing information about grants, funding, and possible treatments which we weren’t aware of,” says Jason. “They have also provided me with opportunities to share my experiences with others. I have been asked to present to numerous groups including Walk participants. I’ve really enjoyed being able to share my story with others and connect with other members of my community.”
Jason and his parents, Sue and Dave, are very involved with the Walk for Muscular Dystrophy. Jason’s team has been one of the top fundraisers each year. They have raised an incredible contribution of more than $35,000 over the years which helps Muscular Dystrophy Canada continue providing critical support, funding and resources to all those affected by neuromuscular disorders in Canada.
“We know how hard it is to face a neuromuscular disorder diagnosis, which is why we continue to be so involved in events like the Walk for Muscular Dystrophy,” explains Jason. “We don’t want to see others go through the same struggles that we have faced. Any chance we have to bring more awareness to muscular dystrophy, the better.”