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.
These were his thoughts from June 2012:
My entire life has been difficult ever since I was diagnosed with Friedreich’s Ataxia in November of 2010. FA is a rare genetic disease that affects my fine motor skills and my walking. For example, my walking is very unbalanced, my writing is almost illegible and my hand-eye coordination is terrible.
This disease is currently incurable, but progress is being made to find a cure. This Ataxia has created a sort of rippling effect for those who care about me. My mother is the most affected, even more so than myself at times. She has been amazing to me, doing everything in her power, and pushing beyond to help me through this and accommodate my needs.
I remember back to when I was first diagnosed, I was so surprised and unsure of how to react. I started worrying, devoting the majority of my time to thinking about what this all meant and what the future would look like. And though I told myself not to think about it and recognized that worrying wouldn’t solve anything, I couldn’t stop the thoughts. However, in a strange way, I was actually a little relieved. All my life I was never the best athlete, I could never skate well in hockey or write neatly. But at that moment all my failures made sense.
In 2011, the rest of grade 8 was awful. The other kids were constantly teasing me and asking me questions that were offensive and I was not in a mental state to ignore it or deal with it. But since then things have only gotten better. Grade 9 was a much better experience and the teasing slowly dwindled to a complete stop. From then on every year, my situation, social circle, and mentality seemed to improve consistently.
Today I have a better understanding of this disease. I hate everything about it. My life is hard but not unbearable. My future is still difficult to think about, people tell me that it won’t be that bad. This disease will progressively get worse. FA has truly changed my life forever. I require help in going about my day, I can’t cook, drive, or even walk without assistance, and those are things I will never likely be able to do independently. It’s obviously a disease that makes me suffer physically, but there’s a mental factor that people might not assume is packaged with it. Not because of FA directly, but more so the ramifications and implications of living with a disability.
Though everything is not all bad. I have been gifted the opportunity to experience so many wonderful things, including meeting Paul Brandt, getting to hang out (establish a friendship) with the Ottawa Senators, and having my wish granted by the Children’s Wish Foundation – a visit to Skywalker Ranch in San Francisco, the private acreage where George Lucas keeps the props for the original Star Wars films.
It is actually incredible to see how many people are willing to do anything for me; I honestly never could have dreamt of so many people caring about me, it’s phenomenal.
I am grateful for the constant love, compassion and support of my family, who never fail to help me with anything I need help with, my friends, who stick with me through the rough patches and always make me smile no matter what, and anyone in the extended community that supports me, your love and caring help motivate me through every obstacle.
What I want people to know is that I have Friedreich’s Ataxia, but I’m still just as much a person as everyone else. We all have struggles, difficulties, and things we need help with, mine just happens to be physical.
Please consider sharing this post to help us spread awareness for those living with a Rare Disease. Let’s continue the conversation and spread the love and acceptance of all.
Should you wish to learn more about FA please visit http://www.curefa.org or for more about rare disease initiatives check out https://www.rarediseaseday.org/country/ca/canada
Making my ARC!
Amy
❤
