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FARAFARA Cure FA

Gracie Boudreaux

Screen Shot 2019 08 02 at 1.51.00 PMName: Gracie Boudreaux

Age: 17

Where do you call home? South Louisiana

Education degree(s): After I graduate high school next year, I want to study mathematics.

Who do you live with? I live with my dad, my sister, my cat, and my dog.

How long have you known you are living with FA? I was diagnosed with FA at 11 years old. When I was 9 my general doctor noticed a heart murmur and I was diagnosed with Hypertrophic Cardiomyopathy. After that we noticed that I was having trouble walking so I saw a neurologist, who found my FA.

Are there any others with FA in your family? I am the only person with FA in my family

Describe your transition from walking to walker/wheelchair. In eighth grade, it was becoming more difficult for me to complete the school day with my walker. By the end of the day I needed breaks to catch my breath and calm my heart, so I decided to start bringing my wheelchair to school. I now always use my wheelchair.

Screen Shot 2019 08 02 at 1.51.57 PMWhat do you like to do to stay active and what type of exercises work for you to stay strong? I ride my recumbent tricycle and I go to physical therapy once a week. I have exercises to do at home that help me with transfers and staying independent. My favorite are step ups and crunches.

When FA gets you down, what do you think/do to feel better? I talk to my friends who support me. Every summer I go to MDA camp and I have made friends with similar neuromuscular diseases that I can relate to, and I met and stay in touch with FA friends.

What is one way living with FA has POSITIVELY affected your life? Living with FA has taught me how to be patient. We can be so caught up in life that we often overlook the important things that are only here for a short time, but I have learned how to slow down and enjoy life.

What is a favorite motivational quote of yours? "Life is 10% what happens to you and 90% how you react to it."- Charles R. Swindoll

Screen Shot 2019 08 02 at 1.52.07 PMWhat is the best advice YOU could give to a person who has been newly diagnosed with FA? FIND A PHYSICAL THERAPIST THAT YOU LIKE!!!! I believe that it is 100% true that exercise slows progression. I wish I would have learned that earlier in my diagnosis. Not only do my PTs help me stay strong physically but they also help me mentally. They take the time to understand FA and being there when I'm feeling alone. It can also be difficult to find PTs that are confident in working with FA because it is so rare and you might have to try multiple places before you find the right one.

What is the first thing you want to do when a cure/treatment to FA is found? The very first thing I want to do when a cure for FA is found is dance the night away!

"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? To me this statement means that I will not use FA as an excuse to not do something I would have done without FA. I will continue to find adaptations and accommodations to help me complete the goals I have in life. It may take longer and everything might not be perfect but I will not let FA stop me.

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