Name:
Lilly King
Age:
22
Where do you call home?
Wisner, Louisiana
What is your education? What is a current goal you have with your education? How will FA add to your future career?
I graduated from The University of Louisiana at Monroe with a bachelor’s degree in psychology. I plan within the next year or so to go to graduate school for counseling. I think having FA helps me to better understand people and empathize with them.
Who do you live with?
I graduated in December 2025, so I am currently living with my parents. I have two younger siblings that are still living at home. I have three others, but they are grown and moved out. I also have a standard poodle named Cookie. I’m so obsessed with her!
What’s a typical day for you?
I currently have a little part-time job at our school board office in Franklin Parish until I decide to go back to school.
How long have you known you are living with FA? When and how were you diagnosed?
I was diagnosed at the age of 13, so I’ve been living with FA for about nine years now. Around the age of 12, when I was cheerleading, my coach noticed I wasn’t landing my toe touches like the other kids. She mentioned it to my parents, but they never really thought anything of it because I was such an athletic kid. At the time, I was a dancer, cheerleader, soccer player, and softball player. I would also swim and run. Within that year I broke my arms three different times from falling. They just thought I was a clumsy kid and needed to finish growing into my body. Since my arm was in a cast, my mom was bathing me and said, “Oh my gosh, what is wrong with your back? Sit up straight—something is wrong.” So the next time we went to the orthopedic, she asked him if my gait looked normal to him, and he immediately said that was not normal at all and got us into a specialist at Shriners. From there they said something was definitely wrong, so they sent me to a neurologist. He took one look at me and immediately knew it was FA because at that time he had other patients with FA. To be sure, I went through lots of genetic testing. Finally, months later, I got the official diagnosis.
Are there any others with FA in your family?
Only me. I tell them I took one for the team.
Describe your transition from walking to a walker/wheelchair.
I was a junior in high school when I started using a wheelchair at school. I used my manual chair in high school because it wasn’t a super big school. I started using the Whill CI electric chair for college so that it would be easier to get around the campus. I drove a Ford Explorer with a ramp in the side, which helped me to go independently.
What do you like to do to stay active, and what type of exercises work for you to stay strong?
When I was first diagnosed, I kept playing all the sports and doing all the things like I did before I was diagnosed until I physically no longer could. After no longer being able to do those things as I used to, I tried to work out as much as possible. I think the reason working out is so important to me now is because it is the closest thing to a sport that I am able to do. I have always gone to the gym on my own, but recently I have started doing CrossFit with my dad!
Do you have any hobbies or special interests?
I have recently been big into online shopping. TikTok Shop knows exactly how to get my money!
What is a good trick to make daily life easier?
My advice to anyone with FA is to always remember what you can do! Even if things are harder now, always at least try because you might surprise yourself!
When FA gets you down, what do you think or do to feel better?
Honestly, my faith is what keeps me going and keeps me full of joy. Also, TikTok videos always make me smile.
What is one way living with FA has positively affected your life?
Having FA has helped me to be able to find the good things in life and just be thankful for small things.
What is a favourite motivational quote?
“Your only limit is your mind.”
What is the best advice YOU could give to a person who has been newly diagnosed with FA?
My advice would be that every person with FA is different, so don’t base your progression or what you are able to do based on the other people in the FA community.
What is the first thing you want to do when a cure/treatment for FA is found?
The first thing I think I will do is run on the beach into the water!
“I have FA, but FA doesn’t have me.” What does this statement mean to you?
If there is something I want to do, I’m gonna do it.
How do you live your life in the face of adversity?
I live my life in the face of adversity by remembering nobody is perfect. Every person has their own battles.
Interviewed and Edited By
Sam Dupre