My name is Mary Nadon Scott. I am currently 37 years old and am happily married to my wonderful and supportive husband, Kevin, and together we have 4 children. We live in Vermont, surrounded by family and friends. I was diagnosed with FA in 2002 (I was about to turn 21 years old) when I was on college at The University of Vermont. Despite many doctors discouraging me, I graduated with my bachelor's degree in nursing in 2004. I practiced nursing for 5 years, I am now able to be a stay-at-home Mom.
When I was first diagnosed I was really scared and angry. I did the whole internet search thing for information, shared and grieved with family and friends, and then stopped talking about it. I didn't want to be scared anymore, and thought that if I didn't talk about FA, then I could just deal with it "later"; it would go away. I had heard about FARA, but at the time I didn't want to be welcomed and supported, I just wanted to be left alone and be in denial. As the years went on and my symptoms progressed, I felt really alone. With a rare disease it can be hard to "find someone like you", but when you live in the small state of Vermont, it can be harder. Especially since I'd run away from FARA so many years earlier.
About 11 years after my diagnosis my Mother-in-law brought to my attention that there was going to be a Friedreich's Ataxia Symposium in Philadelphia, PA, and that it might be a fun road trip to go and check it out. She is a nurse and knew that it would be good for me to attend, to gather more information, receive support, and meet people who also live with FA. This trip, that weekend, changed my life. I was welcomed with open arms by the FA community, my Family, and especially by FARA. It was this weekend that I learned about the patient registry, grassroots fundraising, rideAtaxia, and the FARA Ambassador Program (among many other wonderful things).
After joining the patient registry, that spring I had the honor of enrolling in my first drug trial! Since then I've been able to participate in many other drug trials and FA studies. After my two youngest children began going to school, I began to pursue becoming a FARA Ambassador. I really enjoyed playing an active role in our journey to finding treatment and a cure for FA, but I wanted to be more involved in our community. I wanted to raise awareness of FA, help drive research ever forward, and grow together with my fellow FA community members as advocates and friends united by our passion and purpose. Since becoming a FARA Ambassador I have grown so much. I have deepened my acceptance and love for myself and grown more comfortable in my communication and advocacy skills.
For me personally, becoming an active part of our Family has greatly improved the quality of my life. If you'd ever like to chat about being a Mom with FA, traveling with a wheelchair, or anything else- please reach out!
