I grew up in Katy, Texas – a suburb of Houston. During my childhood, I was 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.
When we were taking dance lessons to prepare for our big day in early 2009, 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 an 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 we discovered that I did not have reflexes.
After the initial exam, he discussed all the possible causes of my symptoms: vitamin deficiencies, blood disorders, multiple sclerosis, tumors, severe 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. All of my blood work was normal, my MRI was clear, my muscles were strong. Nothing explained what was happening to my body.
Then, 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. 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.”
There are a number of factors that can indicate how your case of FA will progress, and because of my later onset, my outlook is fairly good. I have a clean bill of health from the ophthalmologist and cardiologist. I do physical therapy weekly and work out daily to keep as strong and healthy as I can.
Some days are good, some days are bad. Sometimes I almost feel like a capable adult and my thoughts of FA move to the back burner, while other days I am all too aware of my disabilities. I now use a walker full time to prevent catastrophic falls. Adjusting to an assistive device was hard and emotional, but I am grateful for the independence and stability my walker provides.
In spite of the diagnosis, my family and I are 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 this beautiful planet.
Kyle and I welcomed our son, Brooks David, on October 23, 2014. We became a family of four on May 18, 2017 when our beautiful daughter, Collins Claire, was born. 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.