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FARAFARA Cure FA

Carlos Orozco

CarlosOrozco1Name: Carlos Orozco

Age: 21

Where do you call home? Fayetteville, NC

Education: I’ve only obtained a high school Diploma. I do plan on attending college, and major in Liberal Arts. As for my career, it still remains a mystery.

Who do you live with? I live with my Dad

How long have you known you are living with FA? When and how were you diagnosed? Since I was 12 years old, I’d noticed subtle deficiencies in my balance/coordination, but nothing severe. when I began high school is when FA started to become visually noticeable. Abnormal gait, coordination, and speech became a concern. In November of 2009, I began to see a Neurologist at the “University of North Carolina (Chapel Hill)”. On January 10th, 2010; I was diagnosed with FA.  

CarlosOrozco2Describe your transition from walking to walker/wheelchair. After I was diagnosed, I stubbornly continued to walk unassisted, for 3 years. Senior year came, and so did the hard realization that I needed help. For 2 years I used a walker before transitioning to a wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? I don’t have the luxury to go to the gym whenever I’d like, so to compensate I workout using a kettle bell that I have in my room, or I push myself around the neighborhood in my wheelchair.

Do you have any hobbies or special interests? Play video games, watch Anime, read Manga.

When FA gets you down, what do you think/do to feel better? I watch TV or play a game; it distracts me from reality.

What is one way living with FA has POSITIVELY affected your life? It’s filtered out fake friends.

What is a favorite motivational quote of yours? “Love the life you live; Live the life you love” – Bob Marley

What is the best advice YOU could give to someone who has been newly diagnosed with FA? Don’t hesitate to ask for help, you shouldn’t assume it means you’re weak. Also, do the things you’ve always wanted to do before it’s too late, you’ll never regret it.

What is the first thing you want to do when a cure/treatment for FA is found? I would like to travel the world.

"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? What I am shouldn’t define me; who I am should. I try to enjoy the small things in life, and have no shame to do the things that make me happy.

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

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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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