When diagnosed with Friedreich’s ataxia, the first things people usually ask are: “What can I do about this? Is there a treatment or cure? Where do I sign up?” Then, we receive more bad news: Currently, there is no treatment or cure. But there is a ray of…
My Darling Disability
— Kendall Harvey
Kendall Harvey is a wife and mother of two in Austin, Texas. She has been navigating life with Friedreich’s ataxia (FA) since her diagnosis in 2013 at the age of 25. She worked in marketing before “retiring” to be a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. Until that day comes, she aspires to inspire others with her column by detailing personal life lessons about grit and grace. Kendall shares a message of hope despite disability.
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At the end of June, I sustained a fall that resulted in a leg fracture. It happened while boarding the plane home from a fabulous vacation with my husband, my children, and my parents. My son and daughter were very concerned about what, if anything, was broken. After we…
“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn phrases: Life is hard, messy, emotional, and unexpected, and it’s also predictable, inevitable, and complicated. But it can be…
At first, I resented having Friedreich’s ataxia (FA) because it hasn’t allowed me to be the mom I always imagined I would be. Now that I have a couple of years of parenting experience under my belt, I see some similarities between life with kids and life…
Describing a progressive genetic disease like Friedreich’s ataxia (FA) is difficult. It has a wide range of symptoms, most of which are unique to FA and not easily understood unless you have firsthand experience or a loved one with the condition. In this column, I will address some…
I grew up in a church-going family that was always involved in ministry. We spent at least three days a week at church. I had a sound knowledge of Christianity, the Bible, and what it meant to be a Christ follower. I felt invincible when I was close…
I have been working with my physical therapist, Kelli, for a year and a half. She is brilliant at what she does and has become a dear friend. I am so thankful to have her by my side as we fight Friedreich’s ataxia (FA) together. She was…
Third and final in a series. In a previous column, I discussed the tests I underwent to diagnose Friedreich’s ataxia. “Kendall, I was afraid that this might be the case: You have Friedreich’s ataxia.” My doctor looked as shellshocked as us. He studied Friedreich’s ataxia (FA) in his…
Second in a series. In a previous column, I discussed my active childhood and early signs that something wasn’t right. As the evidence began to pile up, I started to accept that someone who has been extremely active her entire life doesn’t suddenly become uncoordinated. I decided…
First in a series. From the time we are toddlers, we start dreaming about the future. We want to be firefighters, teachers, rock stars, race car drivers, or in my case, a zoologist. So many exciting possibilities exist, and we want to do them all. As we get…
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