Name: My name is Donovan Simpson.
Age: I am 29 years old and will be 30 in October.
Where do you call home? I live in Yonkers, NY.
What is your education [degree(s)]? What is a current goal you have with your education? How will FA add to your future [career]? I have an Associate’s Degree in Art and Design and a Bachelor’s Degree in Computer Graphics and Imaging. My current goal is to become a digital multimedia designer and 3D artist. I think FA makes drawing difficult, so I use digital tools to make the shapes instead of having to worry about drawing.
Who do you live with? I live with my parents and my service dog, Yoda.
What’s a typical day for you? My typical day begins around noon because I like to stay up late at night. My schedule changes depending on the appointments that I have each day. To fill my days, I work on Adobe products and Illustrator, I work on 3D models and programming my own video games, and I watch tutorials while I play World of Warcraft. I also spend time writing horror novels. I have multiple genres of novels that I create, and I try to find a balance with everything.
How long have you known you are living with FA? When and how were you diagnosed? I have been living with FA since I was six years old. I had a genetic test to find out the FA diagnosis, which was confirmed by Dr. David Lynch, a neurologist at CHOP.
Are there any others with FA in your family? No one else in my family has FA.
Describe your transition from walking to walker/wheelchair: At first, I was wobbling around when I was in elementary school, and I transitioned to a scooter part time. When I was in middle school, I started using a wheelchair. I found that moving around with the wheelchair was challenging, so I discovered a gear system called wijits. At an NAF meeting, another FAer let me try their wijit system, and I discovered how helpful it was so I began using them myself.
What do you like to do to stay active and what type of exercises work for you to stay strong? Every Monday, I go to an adaptive gym near me called Breakthrough Fit Co where I have a trainer for 1 hour. We do lots of exercises to build my upper arm strength and some leg exercises too. I also have a personal trainer who comes to my house once a week on a different day for another hour, and we use bands to strengthen my arms and upper body.
Do you have any hobbies or special interests? I enjoy playing and creating video games, working on 2D and 3D graphic design projects, writing novels, going to the movies, watching anime, spending time with my parents and caregivers, and reading comic books and manga.
What is a good trick to make daily life easier? A good trick to make daily life easier is to sleep as long as your body needs to.
When FA gets you down, what do you think/do to feel better? When FA gets me down, I use those feelings as motivation to keep working on my projects. I also listen to music on Spotify, especially my ‘Dark’ playlist, which includes songs by Green Day, Linkin Park, Thirty Seconds to Mars, and Skillet. The music reminds me that I’m not alone in what I’m feeling, gives me perspective, and helps me feel better.
What is one way living with FA has POSITIVELY affected your life? One way FA has positively affected my life is the FAmily that we would not have met otherwise. I have so many friends in the FA community. I was also the coolest kid in school because of my FA.
What is a favorite motivational quote of yours? A favorite motivational quote of mine is something my dad told me: Take it one day at a time. That advice has always stuck with me.
What is a piece of advice that someone with FA has given you that encourages and inspires you? A piece of advice that someone with FA gave me was to live life to the fullest. He encouraged others with FA to enjoy whitewater rafting through an adaptive organization called Splore. Many people and families with FA went down the Colorado River through the white water and enjoyed being together for this experience.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? The best advice I can give someone newly diagnosed is “join the club.” Everyone is a huge family, and we all support one another.
What is the first thing you want to do when a cure/treatment to FA is found? The first thing I want to do when a cure for FA is found is I want to go out and walk with my dog.
“I have FA but FA doesn’t have me.” What does this statement mean to you? I think this means I am still able to do things that I want to do, like graphic design.
How do you live your life in the face of adversity? I live my life moment by moment and day by day.
Tell us a little more about you….
In middle school, I had my wish granted through the Make-A-Wish Foundation. My wish was to become an actor and play the Silver Power Ranger. I was the star of my own movie, which was shown at a red-carpet premiere at the Paramount Center for the Arts in Peekskill. This unforgettable experience gave me hope, strength, and joy, reflecting the goals of Make-A-Wish.
Interview by
Alyx Holliday
Edited by
Brittany Sommerfield