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.