Posts by: Kendall Harvey

Kendall Harvey

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.

January 14, 2021January 12, 2021

The FA Community Needs Your Help to Advance a Potential Treatment

Columns, My Darling Disability - a Column by Kendall Harvey

The Friedreich’s ataxia (FA) community has been abuzz with excitement recently. The first two phases of a clinical trial sponsored by Reata Pharmaceuticals showed that the oral therapy omaveloxolone ... Read more

January 7, 2021January 5, 2021

My Loved Ones Perceive My Symptom Progression Differently

Columns, My Darling Disability - a Column by Kendall Harvey

Over the holidays, we spent time with family that we don’t see regularly. I get so wrapped up in my own excitement to see my loved ones that I ... Read more

December 17, 2020December 15, 2020

Calming the Friedreich’s Ataxia Storm

Columns, My Darling Disability - a Column by Kendall Harvey

Lately, I have been falling into a funk easily. All of the “little things” that bother me about life as a Friedreich’s ataxia (FA) patient seemed insurmountably huge and ... Read more

December 10, 2020December 8, 2020

Acknowledging My Disability Is Empowering

Columns, My Darling Disability - a Column by Kendall Harvey

I was diagnosed with Friedreich’s ataxia (FA) in 2013. At that point, I was still pretty “normal.” I could still do almost everything except walk in high heels or ... Read more

December 3, 2020November 25, 2020

I’m Thankful for So Much, Even With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

2020 has been a wild year. Thanks to the pandemic, growing civil unrest, and a tumultuous and pivotal presidential election, we are all leading a life we didn’t anticipate ... Read more

November 19, 2020November 17, 2020

Friedreich’s Ataxia Has Taught Me a Lot

Columns, My Darling Disability - a Column by Kendall Harvey

Before I was diagnosed in 2013, I had never even heard of Friedreich’s ataxia. I learned a lot during the diagnostic process as we assessed the viability of possible ... Read more

November 12, 2020November 10, 2020

The Importance of Being Your Own Advocate

Columns, My Darling Disability - a Column by Kendall Harvey

When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t ... Read more

November 5, 2020November 3, 2020

Progressing Through Friedreich’s Ataxia With a Healthy Perspective 

Columns, My Darling Disability - a Column by Kendall Harvey

Special occasions make me introspective, as I have written before. On days when my Friedreich’s ataxia (FA) symptom progression is clearly noticeable, I take time to observe how my ... Read more

October 29, 2020October 27, 2020

I Feel Both Pride and Envy While Parenting With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I am beyond blessed to be “Mom” to my 6-year-old son, Brooks, and my 3-year-old daughter, Collins. They are wonderful, healthy, happy, energetic, smart, and funny. I feel a ... Read more

October 22, 2020October 20, 2020

Knowing When to Share Information About Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

One of the most difficult parts of using a mobility aid is unavoidably revealing that I am “not normal.” Since becoming dependent on my walker, I feel like I’m ... Read more

October 15, 2020October 13, 2020

After Quarantine, I Am ‘the Disabled Mom’ Again

Columns, My Darling Disability - a Column by Kendall Harvey

Given all of the uncertainty and unpredictability in the world, it is fairly safe to say that nearly everyone has had moments of frustration, fear, and disappointment. Life in ... Read more

October 8, 2020October 6, 2020

Let’s ‘Walk and Roll’ With Our Mobility Devices

Columns, My Darling Disability - a Column by Kendall Harvey

As my Friedreich’s ataxia (FA) symptoms progress, I become increasingly dependent on assistance to walk and to generally function productively. When my symptoms first started, I was able to ... Read more

October 1, 2020September 29, 2020

In the Battle With Friedreich’s Ataxia, We’re Both Relentless

Columns, My Darling Disability - a Column by Kendall Harvey

When I find myself talking about the hard part of battling Friedreich’s ataxia (FA), the word I use most is “relentless.” FA is a rare, genetic occurrence that causes ... Read more

September 24, 2020September 22, 2020

I Have a Strange Relationship With Adrenaline

Columns, My Darling Disability - a Column by Kendall Harvey

In my humble, nonmedical opinion, adrenaline is an amazingly complicated feature of the human body. It always seems to have tricky and unpredictable effects on my ever-changing Friedreich’s ataxia ... Read more

September 17, 2020September 14, 2020

Acting Together to Cure Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He said, “Acting alone, there is very ... Read more

September 10, 2020September 9, 2020

If These Wheels Could Talk

Columns, My Darling Disability - a Column by Kendall Harvey

We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be ... Read more

September 3, 2020September 1, 2020

Informing Children About Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

They say there is no parenting handbook. There is no universal system or code that can set you up for foolproof success in raising your children to be confident ... Read more

August 27, 2020August 24, 2020

Feeling the 7-Year Itch With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, ... Read more

August 20, 2020August 18, 2020

Finding the Ideal Life Partner

Columns, My Darling Disability - a Column by Kendall Harvey

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, ... Read more

August 13, 2020August 13, 2020

When Friedreich’s Ataxia Gives Me the Disabled Blues

Columns, My Darling Disability - a Column by Kendall Harvey

Last week, my husband and I decided it was time for a change of scenery from our COVID-19 quarantine in Austin, Texas, and we rented a beach house on ... Read more

August 6, 2020July 31, 2020

Is the Grass Greener Without Friedreich’s Ataxia?

Columns, My Darling Disability - a Column by Kendall Harvey

I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set ... Read more

July 30, 2020July 28, 2020

Maintaining Abilities With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I ... Read more

July 23, 2020July 21, 2020

I’ve Chosen to Be Intentionally Courageous

Columns, My Darling Disability - a Column by Kendall Harvey

Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function at the capacity I desire. ... Read more

July 16, 2020July 14, 2020

Battling ‘Mobility Envy’ as My FA Symptoms Progress

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia (FA) is a cruel, degenerative genetic disease that attacks the central nervous system and deteriorates muscle coordination, strength, energy, and dexterity. It steals motor skills, making FA ... Read more

July 9, 2020July 7, 2020

Seizing What I Can from Life

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia (FA) is a progressively degenerative neurological disease. It targets almost every aspect of my body, especially coordination, balance, dexterity, and energy. My abilities are slowly diminishing, and ... Read more

July 2, 2020June 30, 2020

Growing Bigger Than Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

People respond to adversity in many different ways. You can rise to the challenge or crumble under its weight. You can push through or bail. Sometimes, you have to ... Read more

June 25, 2020June 23, 2020

Behind Closed Doors: Why I Share the Reality of FA

Columns, My Darling Disability - a Column by Kendall Harvey

I am an open book about most areas of my life. I’ll answer just about any question I am asked, even questions about my Friedreich’s ataxia (FA). FA is ... Read more

June 18, 2020June 16, 2020

How I’ve Adapted to Being Disabled in an Able-bodied World

Columns, My Darling Disability - a Column by Kendall Harvey

Before I developed symptoms and then was diagnosed at 25 with Friedreich’s ataxia (FA), a progressive and degenerative disease, I was healthy, active, and able. Since my symptoms progressed, ... Read more

June 11, 2020June 8, 2020

Fairy Tales, Dreams, and a Cure for FA

Columns, My Darling Disability - a Column by Kendall Harvey

When you are the parent of kids ages 5 and 3, you read lots of fairy-tale books and watch countless Disney movies. You become part of the wonderful stories ... Read more

June 4, 2020June 2, 2020

Choosing Hope Over Fear with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

Friedreich’s ataxia is a daunting, life-altering diagnosis. It changes every aspect of your life, especially as your disease progresses. It changes your ability to do the things that once ... Read more

May 28, 2020May 26, 2020

Instagram vs. Reality with Mobility Aids

Columns, My Darling Disability - a Column by Kendall Harvey

Because of my Friedreich’s ataxia (FA), I use a walker as a mobility aid. The walker helps provide the stability that I can’t accomplish on my own, which helps ... Read more

May 14, 2020May 12, 2020

Pros and Cons of Mothering with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

I am the proud mother to two children: my 5-year-old son and my nearly 3-year-old daughter. We just celebrated Mother’s Day last weekend. My family always does a wonderful ... Read more

May 7, 2020May 6, 2020

It’s OK to Ask Me About FA

Columns, My Darling Disability - a Column by Kendall Harvey

The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I ... Read more

April 30, 2020May 5, 2020

This Year’s rideATAXIA Was Postponed, but We’re Not Giving Up

Columns, My Darling Disability - a Column by Kendall Harvey

Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA ... Read more

April 16, 2020April 14, 2020

Training a New Puppy Isn’t Easy, But It’s Worth It

Columns, My Darling Disability - a Column by Kendall Harvey

I’m always alarmed when I notice the progression of my Friedreich’s ataxia (FA) symptoms, which highlight the harsh reality of my progressive neurological disease. Recently we got a new ... Read more

April 2, 2020March 30, 2020

Journaling Helped Me Document My FA Progression

Columns, My Darling Disability - a Column by Kendall Harvey

One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I knew something was wrong because I ... Read more

March 19, 2020March 18, 2020

I Have a Complex Relationship with Physical Therapy

Columns, My Darling Disability - a Column by Kendall Harvey

I was an athlete until my mid-20s. I swam competitively for 14 years and was a cheerleader, a volleyball player, and an avid runner. My involvement in organized sports ... Read more

December 5, 2019January 15, 2020

Navigating the Holidays with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is a magical month full of ... Read more

August 22, 2019September 11, 2019

The Pros and Cons of Using a Walker

Columns, My Darling Disability - a Column by Kendall Harvey

As a Friedreich’s ataxia (FA) patient, I use a walker 95 percent of the time. FA interferes with my balance and coordination, so my walker prevents falls by providing ... Read more

June 20, 2019August 7, 2019

Donning My Friedreich’s Ataxia Hat

Columns, My Darling Disability - a Column by Kendall Harvey

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. ... Read more

May 16, 2019May 15, 2019

Wishing Away Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

April 18, 2019June 28, 2019

Navigating Curious Kids and Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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, ... Read more

March 28, 2019May 15, 2019

Austin Knows How to Treat People with Disabilities

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

March 7, 2019March 20, 2019

What Fundraising Means to Me

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

February 28, 2019March 13, 2019

Becoming Dependent Restored My Independence 

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

February 21, 2019February 27, 2019

Respecting My Body Despite Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

February 14, 2019February 22, 2019

The Hopes and Risks of Starting a Friedreich’s Ataxia Clinical Trial

Columns, My Darling Disability - a Column by Kendall Harvey

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?” ... Read more

February 7, 2019February 14, 2019

When Life Hands You Lemons

Columns, My Darling Disability - a Column by Kendall Harvey

“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 ... Read more

January 24, 2019January 31, 2019

Similarities in Parenting and Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

January 17, 2019January 24, 2019

A Friedreich’s Ataxia Explainer

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more