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FARAFARA Cure FA

Mandy Davis

One of my favorite quotes, “In three words I can sum up everything I've learned about life: it goes on.” by Robert Frost, is something I am reminded of, often.
 
I have had a typical life – I have an amazing younger sister (a great brother-in-law and the best new nephew), great parents and very supportive extended family and friends, from a small Midwestern town. I have always been an “old soul,” a quiet one who calms and listens but stands up for my beliefs, individuals and roots for the underdog. I am still typical in a lot of ways, but life happens and I like to think I am more unique than I imagined I would be. 
 
In 2004, as a senior in high school, my world was rocked, I received the diagnosis of Friedreich's Ataxia. No one else in our family had/has it. As I processed how things would change, be more difficult, I never thought about giving up. Being a typical teenager, one of my first thoughts was, how will others react? I didn't want pity – I was okay – I just wanted to continue on, normally. My friends visited me at home after my appointment. I told them what I knew and we cried, laughed, joked and by the time they left, I knew I would be okay. It was a lot to take in, but I had it easy compared to many. I like a good challenge and that's how I look at everything FA effects – I couldn't let FA take anything from me, especially my independence. 
 
I am recently widowed – Trevor was amazing, accepting, challenged me, advocated with me and was my world. In 2013, he was diagnosed with a rare type of cancer and passed away in 2014, after a very admirable fight. We joked that we were meant to be – two rarities, paired up, fighting! Since he passed, I have moved closer to home in Missouri and am living on my own with my puppy, Chloe. 
 
After my diagnosis, I went on to college and received a degree in social work from Kansas State University (go, Wildcats)! I worked in hospice for a while and, having relocated recently, am looking for new ways to push myself. I have wanted to get involved with FARA for sometime, to help in anyway I can, and now is the perfect time to take that leap. 
 
I know my wheelchair is going to cause people to be curious, and I love when people ask questions. I get a chance to tell new people about FA. Like everyone, I have bad days. I have days where I get frustrated at the things I can't do as well anymore but it's always short lived. I accept the new challenges and find a way to complete the task at hand. I like to look for the perks that go along with having FA – I never have to “find” a seat, I get awesome parking, meet interesting people and I am here, learning and adapting, everyday.
 
I enjoy traveling, painting, being with family and friends, laughing, playing with Chloe, driving and pushing myself to try new things.  
 
Life isn't easy or fair, but it goes on. Life is fun and way too short not to enjoy. Even on wheels. Especially on wheels.
 
 

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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