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FARAFARA Cure FA

Kendall Harvey

“Que sera sera, whatever will be, will be,” has become my new motto since I was diagnosed withFriedreich’s Ataxia (FA) at the age of 25.
 
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 met the love of my life, Kyle, during my sophomore year of high school. We dated throughout high school and college. On the Fourth of July in 2008, he proposed to me on the ferris wheel at Niagara Falls. Naturally, we started planning the wedding right away. 
 
In early 2009, we began taking dance lessons to prepare for our big day. 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, in 2013 my balance 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.”
 
Fast forward to today. 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 case. 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. I can’t walk down stairs, I bump into more corners and obstacles,  and “ping-pong” down hallways, but I am blessed to still be able to get around unassisted. Some days are good, some days are bad. Sometimes I almost feel like my old self and forget about the diagnosis, while other days I am reminded by stumbling a little more. Yes, my symptoms will progress over time, but I am blessed to have a diagnosis so I can prepare for the future! 
 
In spite of the diagnosis, my family and I are just living life to the fullest. 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. Life is a gift and we do not plan on wasting it by feeling sorry for ourselves. We are traveling, picking up new hobbies, making new friends and enjoying outdoor activities all across the beautiful Texas Hill Country. I know that God will not give me more than I can handle (1 Corinthians 10:13).
 
Kyle and I welcomed our perfect and beautiful son, Brooks David Harvey, on October 23, 2014. Being a mother is truly the greatest thing I have ever done and I am eternally grateful to God for blessing me with my family. With my faith, family and friends by my side– I know that my future holds great things.  I am eager to continue my journey to see where life takes me. So again I say “Que sera sera, whatever will be, will be.”
 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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