Name: Alexis Baker
Age: 26
Where do you call home? Tennessee
What is your education? Bachelor in media communication, currently working on a Masters in Business Administration
Who do you live with? My dad and sister
How long have you known you are living with FA? When and how were you diagnosed? I have known for 6 years. In 2019, I was having balance issues and went to a primary care doctor. They referred me to an ENT who did a few tests and found nothing, so he sent me to a neurologist. I was then given a genetic test.
Are there any others with FA in your family? No
Describe your transition from walking to using a walker. I have so far transitioned to a walker, and it was so scary and heartbreaking. I felt like I was losing all of my independence, but I have adapted and now I just do what I can the best I can.
What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical therapy twice a week and the gym 3 times a week. I also refuse to use anything but a walker full time in the house to keep up my strength and ability to walk some.
Do you have any hobbies or special interests? I love styling creative outfits, shopping, reading and baking.
What is a good trick to make daily life easier? I wake up and tell myself “you can do this.” A positive outlook is so important.
When FA gets you down, what do you think/do to feel better? I think about what I can do and focus on those things. For me, it’s usually baking.
What is one way living with FA has POSITIVELY affected your life? I appreciate small things more. Like time with my sweet Stella (Chihuahua), and things that I can still do.
What is a favorite motivational quote of yours? “In order to be irreplaceable, one must always be different” – Coco Chanel
What is a piece of advice that someone with FA has given you that encourages and inspires you? FA doesn’t change who you are, it just changes who you will be and that choice is yours.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? It is so scary. I’ve been where you are, but please stay in the gym, wear that cute outfit, put on your makeup and just go. It’ll get harder but don’t let it change who you are.
What is the first thing you want to do when a cure/treatment to FA is found? Find a way to live in New York City and help advocate for other uncured diseases.
“I have FA but FA doesn’t have me.” What does this statement mean to you? I am still a person and all of my dreams can still come true. I have struggled the most with believing that but now I know I am still me.
How do you live your life in the face of adversity? I do it anyway. If somewhere’s not accessible, I am going to be carried up those stairs and make everyone feel uncomfortable. We shouldn’t have to stay home just because the world doesn’t see us. I make myself seen.
Tell us a little more about you…. My dad and I have co-founded RiseUp Inc., a foundation to bring accessibility devices to those who are in need. Our purpose is also to bring awareness to what Friedreich’s ataxia is. You can learn more at Riseupfa.com.
Interview by
Noah Griffith
Please note that this post represents an individual’s experience and is not medical advice. Please consult with your doctor about the safest and best way to manage your FA diagnosis.