Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.My love language has always been words of affirmation. When someone gives me a genuine compliment or a little bit of encouragement, it has the power to change my mood and affect my whole day. Niceties lighten my…
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Friedreich’s ataxia (FA) is incredibly rare. So rare, in fact, that I’d never even heard of it before I was diagnosed with it in 2013. Getting that rare, 1-in-50,000-people diagnosis (given to an estimated 2,500 people…
Life with Friedreich’s ataxia (FA) can feel daunting as we face hardships, struggles, and countless tribulations. Most FA patients I know have a positive attitude and try to keep moving forward despite what FA throws in our paths.
I’m frequently asked, “What happened to you?” The person asking usually points at my walker. What they’re really asking is, “Why are you using a walker?” People don’t tend to think of an obvious explanation as to why a…
I often write about how important it is to have a strong village supporting you in life — not only for big things like parenting and disabilities caused by Friedreich’s ataxia (FA), but for all the ups and…
I am the first to admit that I am a Disney fanatic. I have always loved the replicated ideas in Disney movies that friends and family can come together and discover strengths they never knew they had to help…
Since the beginning of my journey with Friedreich’s ataxia (FA), worries about the future have plagued me. Would I have a future? What would it look like? As I learned more about FA, one word stood out: progressive.
It’s not uncommon for me to throw myself pity parties. Living with Friedreich’s ataxia (FA) is a constant battle. I have to choose to be strong every moment of every day and to keep fighting for independence, normalcy,…
Throughout my journey with Friedreich’s ataxia (FA), I’ve wrestled with people calling me an inspiration. My feelings about it have changed and progressed just as quickly as my disabled body. When I was diagnosed with FA in 2013,…
Friedreich’s ataxia (FA) has changed so much about who I am. The physical effects have changed how I think, act, feel, and relate. Some of the changes are good, some are bad, and others are just complicated and hard.
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