Season for Change
When the days get warmer and longer, as Canadians we can’t help but anticipate the change of the season. It has been a long, cold winter. We are ready to give way to blue sky, sunshine and new growth (however, as I am writing this post we are expecting yet another spring snowstorm❄️☹).
My oldest son was diagnosed with a very rare debilitating degenerative neuromuscular disease called Friedreich’s Ataxia (FA) http://www.curefa.org in 2011. This has resulted in a loss of balance and coordination; his brain does not tell his limbs where they are in space. Another complication of this disease is scoliosis. He required a spinal fusion to correct his curve and he was fused from T3-L3. Today he has very limited weight bearing ability and uses a wheelchair full time.
Back in 2015, I was working as an administrator in a spine clinic. I am the mother of 4 kids and I was feeling completely worn out. I had begun a serious Pilates practice about a year earlier and I instantly loved everything about Pilates. I began to think maybe one day I could do Pilates for a living. I thought how valuable Pilates could be for the population of patients that I was seeing at the spine clinic. I also thought, “I think this could really help my son and others dealing with neuromuscular disease”. I knew I wanted to make a difference.
Something so Rare.
In honour of International Rare Disease Day, I asked my son to share his perspective. We both want to begin the discussion of what life really looks like when faced with the challenges of a rare disease. Here is the viewpoint of living with Friedreich’s Ataxia (FA), these are Brendan’s own words. Brendan is currently 21 years old, he is passionate about writing, video games, music and his friends.
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The inspiration for this post is PERSPECTIVE. This post is from my heart ❤ and is about my life. As many of you know, my oldest son was diagnosed with a rare neuromuscular disease called Friedreich’s Ataxia. I want to bring awareness to Rare Diseases as this is something that is the reality of our everyday life. International Rare Disease Day is February 28, 2018. https://www.rarediseaseday.org/country/ca/canada
Friedreich’s Ataxia (FA) is a debilitating, life-shortening, degenerative neuromuscular disorder. About one in 50,000 people in the United States have Friedreich’s Ataxia (FA). This disease affects the heart, lungs and neuromuscular system of the patient. Should you wish to learn more about FA please visit http://www.curefa.org/whatis for more information.