My journey with Friedreich's Ataxia started 20 years ago. It was 1997 when my sister was diagnosed with FA, there was little information available and no hope for a treatment or cure. After much research, I knew I also had symptoms of FA but waited until 2008 (age 28) to get the DNA test done. After waiting 3 months the results were positive. Some of my first symptoms in high school were bad coordination, weak ankles, and foot pain. At age 32 scoliosis appeared and I began relying on handrails on stairways. My late on-set and slow progression have led to using a rollator and holding onto someone's arm to get around at age 36.
I've always lived to follow my dreams despite FA. In 2003, I received a Bachelor's degree in Zoology from SUNY Oswego. Shortly after graduating college I got married and now have three wonderful children. My kids are my motivation to fight harder! They join me in daily workouts and thanks to the AAI grant we enjoy family bike rides together. My workouts consist of yoga, weights, recumbent bike riding, squats, and treadmill. We are a very active family and love adventuring outdoors.
We live in Western New York where the winters are snowy and the summers are beautiful. In 2015 we built an accessible ranch-style house on 13 acres, anticipating my future needs. My family has a hobby farm of sheep, chickens, turkeys, and pigs. I am the leader of a local 4-H Club and a Girl Scout troop. Volunteering is very important to me and I love teaching our youth skills that will help them succeed in the future.
I have been working part-time, seasonally for 6 years as an income tax preparer through H & R Block. I love crunching numbers and helping my clients understand their tax situation. Working only 4 months out of the year I can also be home with my kids during the summers and school breaks. A few adaptations have been made in the office to fit my needs, I have understanding clients that I am open and honest with about FA. At times it is uncomfortable talking with strangers about FA, but I always welcome the opportunity to educate others.
"What have you done today to make you feel proud?" If I don't have an answer, my day is not over!
