The Story of Jon Jans


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Jon First Day of SchoolMy story is much like many Canadians, perhaps not that different from yours.  My parents immigrated from The Netherlands in the 1950s, settling on a dairy farm. We grew up going to school, working on the farm, enjoying 4H and being part of the fabric of rural community.

With the physical strains of farm life, I never had to wonder about my mother’s aches and pains at the end of a long day. Struggling to rise from her chair, the complex realities of myotonic dystrophy had yet to dawn on me.

As a volunteer Fire Fighter, I became aware of Muscular Dystrophy Canada and their work with Canadian Fire Fighters, from coast to coast. However, my department had never really been involved as fundraising was less of a priority than firefighting.

So, what changed for the Fire Fighters in the village of Martintown? Well, it became personal.

Jon and Little GIrl

I was 53 when I found out I had a neuromuscular disorder. With my wife by my side, and my large extended family rooting me on, we came to accept that things were changing. Thanks to the love of my family and my crew, I knew I had a community of support who wouldn’t be afraid to tell me when to take it easy, and remind me that my new physical limitations weren’t just in my head.

Since sharing my story, we’ve held two boot drives for Muscular Dystrophy Canada and, as it turns out, our Fire Fighters don’t mind spending their Saturday mornings on the streets connecting with the community. They’re proud to stand up for an organization that makes a real difference in the lives of patients.

I am one of the lucky ones – I can live a “normal” life. But I’ve seen the impact of this disease on others – some confined to wheel chairs requiring respirators just to breathe. And I’ve sat in a room of Fire Fighters and heard stories that reduced even the toughest to tears. But we keep fighting because we’ve made the Fire Fighter pledge that until there’s a cure, there’s us.




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