Erin ONeil Wedding photo Name: Erin ONeil

Age: 42

Where do you call home? Wakefield, MA, which is about 20 minutes north of Boston.

Education: I graduated college in 2002 with a bachelor’s in psychology and a minor in sociology.

Who do you live with? I recently got married in October 2021. My husband moved into my apartment and my parents live in the same town.

What's a typical day for you? For the past 17 years, I had been working as a receptionist/secretary/coordinator at an oncology clinic. Once Covid hit, I was laid off. I thought I would be very bored and need a new job, but I quickly realized that I had more time to focus on myself. A typical day includes planning my meals for the week, working out at the gym at my apartment complex, using my stander, Grocery shopping, lots of stretching with my PCA, reading, cleaning and organizing. (I’m a bit of a neat freak).
How long have you known you are living with FA? I was diagnosed in 1992 when I was 12 years old. There was little to no information, no FARA, no hope and absolutely no research. Thankfully that has all changed.

Erin ONeil and her HusbandAre there any others with FA in your family? Similar to many other stories, when I was diagnosed, we had never heard the words Friedreich's Ataxia?? If anyone has seen The Ataxian, (free on YouTube) you can see my father saying, "it was the worst time of his life”.

Describe your transition from walking to walker/wheelchair. My transition to a wheelchair was very difficult. Because I was diagnosed so early, I had no friends with FA. I had no one to ask questions or to look at as a role model. It was pretty taboo in the beginning. While I was in college, I used the walls. My sophomore year I got a cane, just so people would stop looking at me as a drunk college student. After sophomore year, I moved out of the dorms, started to commute and slowly started using my wheelchair outside. At that point, I did not know anyone using a walker or scooter, so I went right to the wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? Everything with my life revolves around staying active. Even just showering, getting dressed, doing some cleaning, maintaining an active social life, using my stander often and doing stretching daily. I drink a lot of water and my biweekly deep tissue massage seems to help.

Erin ONeil at FARA Events Do you have any hobbies or special interests? I enjoy reading, spending time outdoors, getting fresh air and much to my husband’s disappointment I love shopping!

What is a good trick to make daily life easier? Keep super poles everywhere and transfer whenever it’s a safe option.

When FA gets you down, what do you think/do to feel better? The grass is not always greener…

What is one way living with FA has POSITIVELY affected your life? The friendships I have made are unbreakable and the FA family is the best part.

Erin and her husbandWhat is a favorite motivational quote of yours? Where there is a will there's a way.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Life is not over; just a little different than planned.

Tell us a little more about you… Because I was diagnosed prior to FARA and did not have role models and people to help guide me through life with FA, I was so passionate to create and build the Ambassador program from its beginning.

Interviewed by
Interviewed by Noah Griffith