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What is your name?
My name is Lilly Woods.
How old are you?
I am 23 years old, and I will turn 24 in August 2026.
Where do you call home?
I was born in Georgia, but I was raised in Ohio, which I call home.
What is your education? What are your current goals?
I am a high school graduate and self-educated. I am currently unsure what career path I want to pursue.
Who do you live with?
I live with my mom and my younger brother, Bridger.
What does a typical day look like for you?
My typical day varies and centers on self-care. I spend a lot of time outside with my dog, often sunbathing. I enjoy going to parks, hiking, and spending time in nature. I go to the gym regularly with my brother, practice yoga, and create art in different forms every day.
How long have you known you are living with FA? When and how were you diagnosed?
I was always pretty clumsy growing up, but I never really thought anything of it. I believe I was initially misdiagnosed, and then I was correctly diagnosed when I was nine years old. I didn’t pay much attention to the doctors at the time. I didn’t start to feel different from other kids until junior high and high school.
Are there any others with FA in your family?
My little cousin, Chris, also has FA.
Describe your transition from walking to using a walker or wheelchair.
I started using a walker in junior high school. Then, in high school in 2020, I began using a wheelchair for longer distances because I was no longer able to walk.
What do you like to do to stay active?
I like to stay active by doing a lot of yoga, swimming, and weightlifting with my brother.
What hobbies or special interests do you have?
I enjoy all kinds of art, but mostly painting and drawing. I also write occasionally.
What is a good trick to make daily life easier?
One good trick to make daily life easier is to practice gratitude. I acknowledge what I’m grateful for, even if it’s something small, and I try to focus on the good.
When FA gets you down, what do you think or do to feel better?
When FA gets me down, I take a minute to breathe and ask God for strength to be patient or for His help.
What is one way living with FA has positively affected your life?
One way living with FA has positively affected my life is that I get to meet so many amazing people. The FA community is overwhelmingly loving, and even outside the community, I meet people who are genuinely grateful to help.
What is a favorite motivational quote of yours?
My favorite motivational quote is: “Let us hold fast the confession of our hope without wavering, for he who promised is faithful.” — Hebrews 10:23
What is a piece of advice that someone with FA has given you that encourages and inspires you?
A piece of advice that someone with FA gave me that encourages and inspires me is, “You gotta get creative.” You have to think outside the box to learn better ways to achieve the things you want to do.
What is the best advice you could give to someone who has been newly diagnosed with FA?
The best advice I could give to someone who has been newly diagnosed with FA is: Don’t let FA hold you back from anything. God gave us the strength to be here. You are not alone. We are strong.
What is the first thing you want to do when a cure or treatment for FA is found?
The first thing I want to do when a cure or treatment for FA is found is to have a big party with all the FAers!
“I have FA, but FA doesn’t have me.” What does this statement mean to you?
This statement means to me that I don’t let FA hold me back. My faith is bigger than my struggles.
How do you live your life in the face of adversity?
I live my life in the face of adversity by focusing on the positives and asking God for help.
Tell us a little more about you.
A little more about me: My favorite color is lilac purple. I have a dog named Moose, four cats, a parrot, and ten chickens. I have the best zodiac sign—the Leo! I love traveling; I’ve been to about 30 states and four different countries in Europe, and I plan to travel more. I like trying new things, and I’m excited to see where life takes me next.
Interview by
Sam Dupre