Our journey with Duchenne started while we were living overseas in Doha, Qatar. Our son Alex was four and a half-years-old when he was diagnosed on November 26, 2014. We had never heard of Duchenne, and it was a devastating time in our lives, especially living in a country with very little medical support available for such a complex disease. Although we had a wonderfully supportive group of friends in Doha, we knew two things right away – we wanted to be closer to family and we absolutely needed the expertise of a comprehensive neuromuscular team. In June 2015, we packed up a decade of our lives and moved back to Canada with Alex and his two sisters Katie and Julianna.
An interesting aspect of our journey has been living in several provinces and getting to know the neuromuscular teams from coast-to-coast. Newfoundland was our first stop as it was home for both me and my husband. I like to think that Defeat Duchenne Canada (formerly Jesse’s Journey) has been a part of our journey before we even knew we were on this path. Ten years before Alex’s diagnosis, I read John Davidson’s book for an inclusive education course. For ten years, it sat in my parents’ basement with most of our belongings while we lived overseas. It was one of the first things I laid my eyes on when we moved back to Newfoundland, and it felt like coming full circle, and as though the Duchenne community was waiting with open arms to welcome and support us. It was a powerful moment that still gives me goosebumps years later.
Shortly after, we moved to British Columbia and had the wonderful opportunity to learn so much from the team at BC Children’s during our four years in Surrey. After a quick time in Alberta and a great experience at Alberta Children’s in Calgary, we permanently relocated back to the east coast. We have been in Nova Scotia since late 2019 and see the team at the IWK pediatric hospital in Halifax plus local specialists in Cape Breton.
Within weeks of our diagnosis, I jumped into online support groups, and began reading as much as possible about Duchenne, steroids, physiotherapy, and upcoming trials. Keeping up with all the latest research has been a huge source of hope.
Defeat Duchenne Canada has been a big part of our lives in many ways. I have had the pleasure of attending the Defeat Duchenne Family Forum in Calgary and the virtual forum from Vancouver. Listening to top experts share their research is truly one of the most hopeful things I have experienced since receiving the Duchenne diagnosis. In 2020, I was honoured to join the Duchenne Family Advisory Committee (DFAC) and see the research funding process up close. Like the Family Forum, the DFAC has been a great source of hope for our family. There are so many fantastic researchers doing cutting edge, extremely promising work.
Alex will soon turn 11, and he is doing well. He knows quite a bit about Duchenne, and we want him to always have a major voice in his care. As a family, we try to make the most of every day and find joy in simple pleasures. We don’t know what the future will bring, but we believe that there will be better treatments in the near future. We are very happy to support Defeat Duchenne Canada in making that dream a reality!
Lorrie Power (Alex’s mom)