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FARAFARA Cure FA

Priscilla Weatherford

Priscilla 5Name: Priscilla Weatherford

Age: 34

Where do you call home? Abaco, Bahamas

Education: High school degree and an Advanced Biblical studies certificate from Liberty University

What is your relationship status? Do you have children? No kids; live with parents.

How long have you known you are living with FA? When I was around seven years old, my thirteen-year-old sister was diagnosed with FA and that same doctor who diagnosed her suspected from my gait that I would develop FA as well. At around the age of eleven, I began losing my balance and noticing difficulties with coordination, etc. About a decade ago, my diagnosis was confirmed with DNA testing.

Are there any others with FA in your family? My older sister Tabitha (us in the photo on her wedding day in 2001) had FA and passed in 2017.

Describe your transition from walking to walker/wheelchair: The most difficult transition for me was after high school when I began using a wheelchair full-time because although it made life a lot easier and brought down my constant anxiety and fear of falling repeatedly, it was hard to admit that I was dependent. I had to start using the wheelchair because I could no longer walk without holding on to someone or tiring long distances (think a college campus) and it was going to make me stand out even more. I was very sensitive and did not like people staring at me because I was staggering, but if they were already staring at me then while I was struggling to walk, I supposed it wouldn't be any different to be stared at because I was in a wheelchair. Thankfully, I made friends who made the transition easier for me to accept.

Priscilla 4What do you like to do to stay active and what type of exercises work for you to stay strong? Wheelchair exercises. (Modified and adapted to me.)

Do you have any hobbies or special interests? Reading and genealogy. I used to blog on a frequent basis. Writing fiction and non-fiction used to be my biggest hobby, as once my dream was to be a journalist or an inspirational historical fiction author.

What is a good trick to make daily life easier? One simple tip would be to keep microwaveable MOIST heating pads and ice packs on the ready!

When FA gets you down, what do you think/do to feel better? I am a Christian and very dedicated to my faith. When FA gets me down, I think about how I have been saved by grace and have hope of an eternity in Heaven ahead of me. I find encouragement from friends who love God, too and read inspiring passages and more in the Bible, devotionals about my faith and books on finding God among the difficulties every human on earth faces in this journey called life. When obstacles and fears surround me, I pray about it and trust in God Who gives me comfort and joy.

What is one way of living with FA has POSITIVELY affected your life? Having FA has allowed me to discover how to overcome challenges while remaining positive.

What is a favorite motivational quote of yours? Adversity can be a blessing.

Priscilla collageWhat is a piece of advice that someone with FA has given you that encourages and inspires you? Do as much exercise as possible for you in your situation!

What is the best advice YOU could give to a person who has been newly diagnosed with FA? My biggest regret is not going to the gym when I could. Try to exercise your muscles as much as possible. Also, don't dwell on the negatives and never give up hope!

What is the first thing you want to do when a cure/treatment to FA is found? Take a long walk on the beach.

"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? The statement "I have FA but FA doesn't have me" means to me that despite this debilitating condition I can still enjoy some of the simple things in life and try to be an encouragement to others.

Tell us a little more about you...I am a descendant of British Loyalists who settled The Bahamas during the American Revolution in the late 1700's. My sister and I were possibly the only two known cases of Friedreich's Ataxia in The Bahamas. My family runs a mission for Haitian migrants here and I have been a Sunday school teaching assistant and more my whole life. I studied commercial writing for one year at Pensacola Christian College in Florida in 2002. I also worked as a buyer and inventory manager at a wholesale grocery for six years here in The Bahamas.

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About the Author

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