Name: Lilly Kate King
Age: 16
Where do you call home? My home is Winnsboro, Louisiana, which is in the northeast part of the state.
Education: I am a sophomore at Franklin Parish High School, where I am an honor student.
Family: I have my dad Jeremiah, my mom Kasey and my step-mom Nikki. I have one sister, Kaylee, and two brothers, Kason and Logan. None of them have been tested and have no symptoms of the disease. I also have 3 pets, a miniature poodle named Sophie, a bunny named Max, and a labradoodle named Nash.
What’s a typical day for you? My daily routine during the school year is waking up at 6:00 a.m., get dressed, eat breakfast, and drive myself to school. My school is the only public high school, so it is very big. I have every class with my best friend/cousin. She helps me a lot. When school is out, I am very tired and want a nap. Then, I work on schoolwork at home. On Mondays and Wednesdays, I have physical therapy.
How long have you known you are living with FA? I found out that I had FA in May of 2017. I had symptoms a few years before my diagnosis, mainly loss of balance, but I just called it me being clumsy.
How were you diagnosed? I was diagnosed after having three broken arms. On the second broken arm, my mom noticed my back curving while she was bathing me. On my next check-up, they confirmed that I did have scoliosis, but it was not bad enough for a brace; it was only 17 degrees at that time. On the third broken arm, my mom pointed out my gait to the orthopedic doctor and he decided that something else was going on. He sent me to Shriner’s Hospital. When I got there, they told my mom that the broken arm looked to be the least of our worries and sent us straight to the neurologist, Dr. Pena. It was supposed to take 6 months to get an appointment, but he wanted to see me right away. Two days later, at my appointment, he took one look at me and called my parents to let them know he believed this was kind of cerebella ataxia. He had already seen several patients with FA, so he was pretty sure that was what I had. After genetics testing, scoliosis scans, nerve conduction tests, heart tests, and an eye doctor appointment, it was confirmed by my genetics test that I definitely had FA. My parents didn’t tell me right away, and this made me scared because I knew it had to be serious after all those doctor appointments. After a month, they finally told me that I had FA.
Are there any others with FA in your family? No one else in my family has FA.
What do you like to do to stay active and what type of exercises work for you to stay strong? I stay active by riding my bike, walking as much as I can, working out at the gym with my dad, and physical therapy. Some of the activities I do at physical therapy to stay strong are walk on the treadmill, loaded dead lifts, loaded squats, activities to keep my ankles strong, a large variety of balance and coordination exercises, and exercises to help optimize my core strength. I also love to swim in the summer.
Do you have any hobbies or special interests? Some I have are painting, taking pictures, baking, hanging out with my friends, doing make-up, and watching tik tok and youtube on my phone.
When FA gets you down, what do you think/do to feel better? When I get down, I usually talk to my mom or some of my friends that are also battling this disease to make myself feel better.
Tell us a little more about you…Some of my favorite things are visiting new places, and I especially love going to the beach. When I grow up, I definitely want to go to college in either California or Florida.
Interview by
Noah Griffith