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Kendall’s Courageous Story: Her Journey with Friedreich’s Ataxia

I am so fortunate to meet and speak with incredibly inspiring everyday heroes through this #hopelives blog. Today’s guest contributor, Kendall Harvey, is no exception, and I was blessed with the opportunity to meet her for coffee a few weeks ago. Her story of perseverance is one I hold dearly; she is an amazing young woman. Kendall is working to raise awareness about a rare genetic disease called Friedreich’s Ataxia (FA); she also lives courageously with FA. Enjoy her story and her unique perspective on life; she is an inspiration to us all.

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Hi there, my name is Kendall and I have a rare recessive genetic disease called Friedreich’s Ataxia (FA). FA causes progressive damage to the nervous system, resulting in symptoms ranging from gait disturbance to speech problems. It can also lead to heart disease, scoliosis and diabetes. FA is a debilitating, life-shortening, degenerative neuro-muscular genetic disorder. It is estimated that around 5,000 people in the United States have FA.  To learn more about FA, visit my site, www.teamkendall.org. To learn more about me and my story, just keep reading. 🙂

Kendall Harvey's photo for blog contribution

Kendall and Her Supportive Family

“Que sera sera, whatever will be, will be,” has become my new motto since I was diagnosed with FA at the age of 25. https://ssl.gstatic.com/ui/v1/icons/mail/images/cleardot.gif I grew up in Katy, Texas – a suburb of Houston. For as long as I can remember, I was always very active: swim team, cheerleading, softball, volleyball, track, and any other sport I could participate in. My childhood was a very happy time and I was just like every other kid my age.

​I began noticing my balance was changing in early 2009 while taking dance lessons to prepare for my upcoming wedding to the love of my life, Kyle. I remember thinking “I used to be a lot better at dancing. Why does dancing suddenly feel so awkward and difficult for me?” I felt a lack of coordination that I couldn’t explain – my body just wasn’t responding the way it used to. Over the next three years, I continued to struggle with agility and gracefulness. I chalked it up to aging, “Oh, I am just getting a little older,” or “I am not as active as I used to be, so I must just be out of shape.”

However, by 2013 my balance had only continued to get worse and I just knew something wasn’t right. What was happening to me, the changes with my body, my speech and my ability to walk, didn’t add up; something was off. So I went to a new internal medicine doctor to discuss my concerns. She referred me to a neurologist who led me through my diagnostic journey. We did the initial neurological exam (walk in a straight line, follow my finger, wiggle your toes) and then he tested my reflexes. We discovered that I did not have reflexes. That was a surreal moment because everyone has reflexes, right? What does it mean that I don’t? It must be something serious.

After the initial exam, he discussed all the possible causes of my symptoms: vitamin deficiencies, blood disorders, multiple sclerosis, tumors, gluten intolerance or genetic disorders. He assured me that everything would be fine and we would figure this out together. We began ruling things out. My blood-work was negative, my MRI was clear, my muscles were strong. What could it be? Maybe it was something genetic?

My doctor ordered a full genetic panel for me. I remember thinking “Oh, just another blood test to rule something out on this diagnostic journey.” I thought there was no way it was genetic because my parents, brother, grandparents, aunts, uncles and cousins were all fine. I went into the appointment on August 19th, 2013 fully prepared to find out what the next possibility was. Luckily, Kyle and my parents were there with me when we received the results. The doctor walked in and said “Kendall, I wish I had better news for you. I feared that this might be the case. You have Friedreich’s Ataxia.”

After I received my diagnosis, I naturally wanted to know more about FA. When I Googled “What is Friedreich’s Ataxia” I saw the link to the Friedreich’s Ataxia Research Alliance (FARA) site. I was encouraged by the URL “curefa.org” so I figured that would be a good place to start my research. Boy, oh boy was that the right call! My family and I visited the FARA site quite a bit in the beginning (and even now!). We were desperate for information about this disease, updates on clinical trials and research, connections with others dealing with this diagnosis and most importantly – a way to get involved.

I don’t know what I did to deserve such a wonderful support system, but I couldn’t be any more thankful for each and every person in my life. When news about my diagnosis began to spread, I saw the need to educate my network about Friedreich’s Ataxia. Considering I had never heard of it prior to the diagnosis, I wasn’t surprised that none of my friends or family knew what it was either. So I began educating my network about FA – what the disease is, how it works, what my life with FA looks like, and what is being done to cure this disease.

I initially heard about Ride Ataxia through the FARA website. News about the success of previous years’ events inspired me to step up and do my part to support FARA. I wanted to get involved in Ride Ataxia because I have always been a very active individual and this was an event that I could participate in alongside my friends, family and fellow FA community. I was beyond blessed to have an incredible network of friends and family who kept asking “what can I do to help?” The ride was a great answer! I told everyone I knew about Ride Ataxia and I was determined to have Team Kendall make a big splash right out of the gates.

Team Kendall pulled together and we ended up having a total of 25 riders! Once we educated our friends and family about the disease and all of the amazing progress that is happening to cure FA; donations began pouring in. We were all so excited to watch that ticker go up and up knowing that Team Kendall is making a difference! Our final number for the 2014 event was $38,360!

Next year’s ride is set to take place on April 11th in Denton, TX. I update my site frequently, so please check teamkendall.org for information and ways to get involved!

As for me and my family, we now know more about this disease and my specific case. I have been classified as mild-to-moderate and I have a good prognosis because of my later onset. There are a number of factors that can indicate how your case of FA will progress, and to date, my outlook is fairly good. I have a clean bill of health from the ophthalmologist and cardiologist and we do not foresee the possible cardiac and vision symptoms becoming a part of my journey. For now – I walk slower; I am less stable; and I am not as graceful as I used to be. Some days are good, some days are bad. Yes, my symptoms will progress over time, but I am blessed to have a diagnosis so I can prepare for the future!

While FA is always on our minds, we try to continue down the path of life WE choose, not the one chosen for us by this disease. I think the future holds a whole universe of possibilities for me! I am currently 6 months pregnant with my first child (a boy!) and I couldn’t be any more excited for the future! With God and the amazing friends and family he has placed around me, I know that FA will not take away anything from my future – it only adds to my story. I will continue to support FARA and do my part to educate those around me about FA because I believe that together we WILL cure Friedreich’s Ataxia!

Visit teamkendall.org for more about Kendall’s inspiring story!
You can also find her support group on Facebook: https://www.facebook.com/TeamKendallFA.

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