Name: Abby Y
Where do you call home? I live in a small suburb of Harrisburg, Pennsylvania.
Education: In the fall, I will be returning to York College of Pennsylvania as a sophomore undeclared student. I am exploring my options of being a Recreation and Leisure major with a therapeutic concentration. I want to have a career where I can work with people who have physical disabilities!
Occupation/Employment: Along with being a student, I have a work study position as a desk attendant, as well as a summer job at Michael’s Arts & Crafts as a cashier.
How long have you been living (or known you are living) with Friedreich's Ataxia? When I was nine years old, my mom noticed that my left foot was turning in when I walked. I was sent to a neurologist who diagnosed me with Charcot Marie Tooth. It wasn’t until I was thirteen that I was sent to a cardiologist, due to experiencing dizziness, that he suspected something different was going on. Meanwhile, my youngest brother began showing similar characteristics. Finally, when I was 16, both my neurologist and cardiologist sent us to Dr. Lynch. After genetic testing it was confirmed that my brother Chase and I have FA.
Describe your transition from walking to walker/wheelchair. Currently, I am still able to walk (occasionally I need some assistance). However, when I go back to school I am exploring my options of using a walker or a wheelchair to help me get around campus.
What do you like to do to stay active and what type of exercises do you do to stay strong? As far as exercise, I recently got my very own Catrike! I received it through the generosity of the Ataxian Athlete Initiative. I absolutely love riding my trike anywhere and everywhere. My brother Chase got one as well. We ride them every day to help build and maintain our strength so we can stay walking for as long as possible. We are also training to ride in Ride Ataxia Philly this October with our friends and family.
What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? Although FA brings many challenges, I feel that being diagnosed has been positive. I have learned how strong of a person I can be and I am more appreciative of the little things. Not to mention I have also made some pretty awesome friends from all around the country.
What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? I would tell a newly diagnosed family NEVER to Google ‘Friedrich’s Ataxia’. Reading the stuff on Wikipedia is scary and the worst case scenario. Although it can be a life-threatening condition, you can’t let FA get in the way of living your life. Do anything and everything you can. I would also get involved in the FA community. Go to any and every fundraiser you can and meet and talk to other FA families. Building a support network of people who understand what you’re going through makes everything a lot easier and less scary.
What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? When a cure for FA is found, the first things I will do are go on a run and go down a flight of stairs without holding onto a railing. They are both very simple things I have not been able to do in a very long time. I might also do a cartwheel or jump rope.
"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 try to live by this quote every day. My friends have told me that it’s so inspiring to see me doing things and not letting my disability get in the way of what I want to accomplish. I do things that I want, not what my disability can’t.