Name: Aly Bourbeau
Age: 24
Where do you call home? Central New Jersey
What is your education [degree(s)]? What is a current goal you have with your education? I have my Bachelor’s in the Science of Business Administration for Digital Marketing and Sports Management. My dream job is to be a Social Media Administrator for the New York Rangers.
Who do you live with? I currently live in Florida with my two roommates.
What’s a typical day for you? I get up, do my morning routine, get ready for the day, and work. I normally work, and when I’m not working, I hang out with my friends or roommates.
How long have you known you are living with FA? I was diagnosed in 2016, my sophomore year of high school. I thought I was just a very clumsy child, but I never grew out of it.
Are there any others with FA in your family? Nope, just me!
Describe your transition from walking to a walker/wheelchair. It was difficult. I started falling a lot more, and walking became painful, so I got a walker. About two years after that, I got a wheelchair, as walking distances became almost impossible.
Do you have any hobbies or special interests? I love going to concerts and shopping with my friends.
What is a good trick to make daily life easier? I just take it slow; if I slow down and focus on what I’m doing, it helps me.
When FA gets you down, what do you think/do to feel better? I listen to my favorite artist, One Direction, or I watch a funny movie or YouTube video.
What is one way living with FA has POSITIVELY affected your life? Being a part of the FA Community. I’ve met so many amazing people, I’ve got to go to different events all over.
What is a favorite motivational quote of yours? “Little steps still move you forward.”
What is the best advice YOU could give to a person who has been newly diagnosed with FA? FA doesn’t define who you are. There’s going to be bumps in the road and hard times, but you can shine through; don’t be afraid to live life.
What is the first thing you want to do when a cure/treatment for FA is found? I want to go to the beach and run in the water with my cousins like I did when I was a kid.
“I have FA but FA doesn’t have me.” What does this statement mean to you? I am my own person, I’m not FA, I’m Aly. FA doesn’t define me or make up who I am; I have my own personality, hobbies, interests, etc.
How do you live your life in the face of adversity? I try to live my life as normally as possible. I live on my own, I go out, I hang out with friends. I try not to let FA hold me back.
Interview by
Brendan Halverson