Meet Lilly Woods

Name: Lilly Woods

Age: 21

Where do you call home? I live on a farm in Medina, Ohio.

Education: I graduated from Buckeye High School in 2020 and I’m not a big fan of school so I don’t have any additional plans for school

Who do you live with? I live with my mom, Lisa, my younger brother, Bridger, and a lot of animals.

What’s a typical day for you? Wake up, get ready for the day, enjoy the weather depending if it’s nice, hangout with my brother, go to the gym then unwind and relax.

How long have you known you are living with FA I was diagnosed with FA when I was 9 but I didn’t understand what that meant ‘til I was 14.

Are there any others with FA in your family: My younger 2nd cousin Chris has FA.

Describe your transition from walking to walker/wheelchair: It wasn’t until I was 12 that I had to use a wheelchair for long distances because I would fatigue so easily then at 14 I started using a walker because it helped me keep steady and at 18 I fully relied on the wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? Almost every day me and my brother go weightlifting at the gym, and I also practice standing when I can. I like to think it helps to remind my body what muscles to use.

Do you have any hobbies or special interests: I like drawing with regular pencil eraser and paper, I usually draw portraits and I like painting nature scapes with acrylic.

What is a good trick to make daily life easier: Have a positive mindset and don’t get stuck on the negatives just keep pushing forward. Also learn to accept and love yourself and be able to have fun by yourself.

When FA gets you down, what do you think/do to feel better: Definitely jamming out singing and dancing to all kinds of music, plus it’s better when you have a friend.

What is one way living with FA has POSITIVELY affected your life: I’ve made so many awesome friends through FA Woodstock and other events. Our family grows every year and I’m so grateful to be in the FA community.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Learn to love yourself because no one can do it better.

What piece of advice that someone with FA has given you that encourages and inspires you? Don’t dwell on what you can’t do what you can.

What is the first thing you want to do when a cure/treatment for FA is found? Learn how to dance or swim.

How do you live your life in the face of adversity? I live my life freely and I do what I can.

Tell us a little more about you: I’m really shy and quiet until you get to know me. I am a lover of all animals, but my favorite animal is a Siberian tiger because their the biggest and fluffiest of the tigers, I would want to cuddle one but it’s probably not a good idea. my favorite color is periwinkle and I’m in between a Hufflepuff and Gryffindor.

Interviewed by
Brendan Halverson