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FARAFARA Cure FA

Jack DeWitt

JackDeWitt1Name: Jack N. DeWitt

Age: 15

Where do you call home? Southeast Michigan (Go State!)

What is a current goal you have with your education? I’m a high school sophomore this year. I would like to attend Full Sail University for a degree in digital graphics.

What is your relationship status? Who do you live with? I am currently single (unfortunately) and live at home with my Mom, Dad and brother.

What's a typical day for you? Wake up, go to school, come home, do homework, go to bed. Wash. Rinse. Repeat.

How long have you known you are living with FA? (When and how were you diagnosed?) I’ve known I have FA for 5 years, since I was 10. Before that, I was misdiagnosed with cerebral palsy because I was a preemie but then we noticed the progression.

Are there any others with FA in your family? No. 

Describe your transition from walking to walker/wheelchair. I started using a walker in 4th grade when I was getting hurt too much falling. In 5th grade I started using a scooter and now I use a wheelchair with Wijits or my power chair. I resisted using the scooter and wheelchair at first, but as it became harder to walk it was definitely a necessity to stay safe and save energy. 

JackDeWitt2What do you like to do to stay active and what type of exercises work for you to stay strong? I like to swim, although it has gotten harder since spinal fusion surgery. I also do OT and PT for stretching and core strength and use my power chair which stands up.

Do you have any hobbies or special interests? Video games, reading, playing cards and hunting.

What is a good trick to make daily life easier? Make fun of everything. Yourself mostly.

When FA gets you down, what do you think/do to feel better? I listen to music, especially Eminem. In one of his songs he says that you have to cause a ruckus before you kick the bucket, make yourself go for broke.  That always helps me push harder.

What is one way living with FA has POSITIVELY affected your life? The ability to make fun of myself.

What is a favorite motivational quote of yours? And with a bit of a grin, and a lift of his chin he took what couldn't be done and he did it.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Just because you have FA numbers on a sheet of paper or a screen, it doesn't define you.

"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? I just stopped focusing on what other people thought a LONG time ago and I live the life I have as best I can.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday.

JaimePlourdemtcsignatureJamiePlourde2015

 


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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