My name is Emily! I have Friedreich's Ataxia; I was diagnosed at age 12. At age 6 I was the fastest runner and most athletic in my kindergarten class, but at age 8 I realized I had trouble keeping up with my friends when we played outside, I also realized that I had trouble catching my breath. That was also the time that my dad and uncle noticed my gait was “off”. My parents took me to my pediatrician; he suggested orthotics, which helped my walking for a few years. After the few years ended, I had pain in my feet and ankles. Although my foot massages from my dad weren’t enough, my parents took me to the pediatrician again and he recommended for me to see Orthopedics at Children’s Hospital of Wisconsin. After Orthopedics, I saw: Neurology, Cardiology, Gait testing, an MRI on my spine and my brain, and finally Genetics. The Doctor in Genetics had an idea what I had until he took a blood test that told us “for sure” that I had FA. I spent a year and a half at Children’s Hospital to find out what I had! By then I was 12.

My parents told me what I had when we were alone; I was scared for the future and also not able to believe them. I went through a depression that caused me to lose weight and I stopped going out of my house. It was hard for me to walk and keep up with my friends; my doctor put me in AFO’s that went up to my ankle. Since I wanted to be “normal”, I hid them under pants and long socks when I wore shorts. The last of my depression was when I was 13 when I was bullied for the way I walk and acted. My parents said that was the last straw, and my mom moved me to Milwaukee and out of the country. In the city, I saw so many different people: different religions, colors, abilities, etc. I attended Nicolet high School where I needed to start using a cane. I met so many friends that got me out of my depression; I even met my best friend, Talia, who was in a wheelchair at the time. She also wore AFO’s and taught me the true meaning of them and how to show them off and be proud of them.

I’d like to introduce my walker, I call him Wilson, (don’t ask me why, because I don’t know the answer either!). I decorated him in purple tie-dye duct tape when I needed to start using him my sophomore year. At that time, I noticed incredible pain in my back. My physical therapist noticed that I had scoliosis; I had a spine fusion and then I was placed in an awesome wheelchair. My wheelchair’s name is Stu, he is lime green like my idol, Aaron (Wheelz) Fotheringham’s wheelchair. My wheelchair is a Smart Drive, which gives me assistance in wheeling.

When I was 13, I was nominated for Make-A-Wish. I wished to go to Hawaii to swim with sea turtles. Sea turtles are my favorite animal; I can tell you any fact about them! My mom, dad, big brother, and I were picked up in a limo and drove to the airport. The flight was 16 hours from Atlanta to Hawaii! It was definitely worth it! We saw Sea World, Pearl Harbor, and the ocean; we did snorkeling, swimming, ate at a Luau, underwater scooters, and scuba diving! On the last day of the trip, my mom pulled the car over for one last swim. We were swimming and then 100’s of sea turtles came onto the shore to sunbathe! The sea turtle lifeguards let me go up close for a few pictures! My wish came true!

I am currently a junior at Nicolet High School. I have discovered my hobby and soon-to-be career, writing! I have been writing since I was 6, and now I am working on a book. My characters all have a physical or mental disability, so I can show my readers that people with disabilities are as “normal” as anyone else! Being normal is not what is on the outside; it’s what’s inside a person that counts. I also love to swim and be outside and be with my best friends! Talia is now a senior at Nicolet High School and she is now walking! We continue to go to physical therapy together! I have a very small effect on my heart, but I’m keeping it strong. I believe that being strong is not in your muscles; it’s in your heart.


A 'Spotlight' post wiil be featured on the FARA Ambassador Program blog on the third Thursday of each month to recognize some of the people living extraordinarily in the face of Friedreich's Ataxia. We are thankful for everyone working so hard to support the search for treatment and a cure for Friedreich's Ataxia! We hope that each post on this blog will be a source of encouragement to you.
Together we WILL cure FA!