My Darling Disability - a Column by Kendall Harvey

In December 2025, my husband, Kyle, and I traveled to the Children’s Hospital of Philadelphia to see neurologist David Lynch. It was the first time I had traveled for Friedreich’s ataxia (FA) care since transitioning to predominantly using a wheelchair. Therefore, much of the discussion centered on this transition.

Friedreich’s ataxia (FA) is all-consuming. When I allow my experience with it to consume my thoughts, life with FA can seem like an insurmountable problem with no hope of rescue or normalcy. Living with FA and its symptom progression is entirely beyond my control. So what can…

This morning, I did something I rarely do: I asked my children for help with writer’s block. Every Monday morning, I sit down at my computer to write about whatever is in my heart or on my mind as it relates to living with Friedreich’s ataxia (FA).

My husband, Kyle, who will turn 38 next month, has been involved in sports since the age of 5. He played baseball in college and learned numerous life lessons that have shaped him into the kind of husband, father, co-worker, coach, and volunteer he is today. To provide some background,…

Friedreich’s ataxia (FA) shook up my life in every way imaginable. I started to notice a loss of balance and coordination in early 2013, which resulted in a five-month diagnostic journey and then a diagnosis of FA that August. It’s fair to say that in those early days,…

For Thanksgiving break, my extended family rented a cabin in a small town in Oklahoma. It was a lovely week to unplug, unwind, play board games, laugh, go on adventures, and enjoy nature. We all agreed we must make the trip again and do it regularly. I truly loved getting…

My family and I are obsessed with the singer-songwriter Forrest Frank. His music is catchy, happy, positive, and full of bite-sized Biblical truths. We especially enjoy listening to his song “No L’s” before sporting events to remind ourselves that the outcome of a game is a matter of…

Life has not been easy lately. On top of the constant daily struggles with Friedreich’s ataxia (FA) and its various symptoms that I must adapt my life to accommodate, hardship has surrounded my village. I fractured my femur in September and required surgical repairs. Our Great Dane, Hank,…

Yes, Friedreich’s ataxia (FA) is hard. Yes, its widespread symptoms are always on my mind. When I am at social events, I am overwhelmingly aware of my disability and the lifestyle adaptations it demands. Despite all of that, it is not the only thing I am capable of discussing,…

As my Friedreich’s ataxia (FA) symptoms have progressed, my abilities have deteriorated, forcing me to adapt. My progression has been fairly steady and predictable, all things considered. Except for temporary circumstances like injury or illness, I usually know what the next morning will bring, physically. When it became…