Donning My Friedreich’s Ataxia Hat
I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. This hat is too…
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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Identifying and addressing your own needs is vital in life with FA
Being able to recognize your needs is a big sign of maturity. As a parent, I’ve had a front-row seat as my two young children, who have very different personalities, learn to recognize when…
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Wishing Away Friedreich’s Ataxia
Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily,…
Navigating Curious Kids and Friedreich’s Ataxia
As a mom, I am obviously around kids all the time. But not just my own. I am around kids when I take my children to school, T-ball, church, play dates, restaurants with playgrounds,…
Austin Knows How to Treat People with Disabilities
Earlier this year, I was extremely nervous about using my walker in public. Previously I had been able to “hide” the effects of my Friedreich’s ataxia (FA). I used shopping carts,…
What Fundraising Means to Me
I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when Ellen DeGeneres has…
Becoming Dependent Restored My Independence
One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing a device…
Respecting My Body Despite Friedreich’s Ataxia
I may not like my body, but I respect it. I often find myself explaining what I mean when I say “I hate my body.” So many people the world over say that…
The Hopes and Risks of Starting a Friedreich’s Ataxia Clinical Trial
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…
When Life Hands You Lemons
“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…
