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FARAFARA Cure FA

Erin O'Neil

 

FA is rare. One has a better chance of getting a hole in one
on a Par 3 then being diagnosed with FA.

You have the same odds of dying of a heart attack while running a marathon then being diagnosed with FA. Yet with FA being rare and affecting 1 in 50,000 I was diagnosed with FA in 1992.

 

When I was told I had Friedreich's Ataxia, I didn’t know what that was or even how to spell it and honestly I didn’t care much, I was 12. I never thought I would end up in a wheelchair. Things like that don’t happen to me. I thought the odds were in my favor.Erin I played softball, soccer and basketball up until freshman year of high school when I became so off balance and uncoordinated. Although I had to stop playing and began to manage the teams, I never gave up. I was in the drama club, class chauffeur, prom court, skipped classes, got detention and was a typical high school kid. I also walked funny but life goes on.

During my 3rd year of college things were becoming unsafe, I had to start using a wheelchair. I was falling and spraining my ankle a lot, I was feeling embarrassed at the stares from outsiders and not wanting to carry books home to study or carry my tray in the cafeteria. At this point things became clear, I could choose to sit around, waste away and feel sorry for myself, or I could just carry on. I always chose to carry on.

 

I graduated in 2002 with a bachelors degree in psychology with a minor in sociology. During this time, I held a part time job, kept up with my academics, and a full social calendar. The day of graduation, 10 years after receiving my diagnosis, I rolled across the stage with pride and fear. Proud of my accomplishments but fearful of what the future might hold.

After college I took the next logical step in life, got a job and moved out of my parents' house. As I approach 21 years since my diagnosis, I still work full time, I still drive myself everywhere, I still live in my own apartment, I still keep up a busy social calendar. I have been skydiving kayaking, parasailing, ATVving, sailing, skiing, I trike, travel, fund raise for FARA. I keep in shape so that when we find the cure, I will be ready!

Erin


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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