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FARAFARA Cure FA

Barbie

BarbieName: Barbie

Age: 21

Where do you call home? I live in upstate NY.

Education degree(s) I plan on starting school in the fall.

Who do you live with? I am single and live by myself.

How long have you known you are living with FA? I was diagnosed in 2014.

Are there any others with FA in your family? I have a younger brother with FA.

Describe your transition from walking to walker/wheelchair. Like most people, I resisted the use of any assistive device. I currently use a walker and wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? I like to walk, do squats and some weights.

What is a good trick to make daily life easier? I open bottles with my mouth, my siblings think it's gross, but I don't care. It helps me stay independent.

Barbie CollageWhen FA gets you down, what do you think/do to feel better? After I am done crying, I work out or go for a ride (wheelchair ride).

What is one way living with FA has POSITIVELY affected your life? Living with FA has taught me how to plan and prioritize better.

What is a favorite motivational quote of yours? "When life changes to be more difficult, you must change to become even stronger. " ~anonymous

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Participating in research and learning more about the science behind FA has helped me feel more in control with my life.

What is the first thing you want to do when a cure/treatment to FA is found? When a cure is found, I want to go for a run.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? It means that I can still be myself. I try to live my life with what I have.

Mandy Davis Signature

 


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