What a difference a year makes! On August 19, 2013, I was diagnosed with Friedreich’s Ataxia (FA). At the time, I knew nothing of the disease except that it was serious and currently had no cure. I felt so hopeless and afraid because I didn’t know any better.
When I first learned that I had FA, I thought that my life was over. All I remember from those first few days after the diagnosis was the scary information I read on the internet which was full of bleak information and out-dated statistics. I thought that a time-clock had begun on my life and that the countdown would be a miserable one of missed opportunities and physical frustrations.
As I began seeking more information about FA, I learned that every case is very different and that the FA community is an active and optimistic group on the verge of greatness. Dedicated doctors and researchers together with the Friedreich’s Ataxia Research Alliance (FARA) have grown leaps and bounds in the last decade or two. We now know so much more about the disease and the atmosphere of hope for a cure is electric as we seem to find out more every day! It seems like clinical trials and pharmaceutical companies are making advances every week as we learn more and get closer to finding a cure.
A few weeks after the diagnosis, I decided it was time to step up and do my part! No more pouting, no more hopelessness. With the support of my fantastic friends and family, I started Team Kendall. I wanted to educate my network about this disease. Awareness was my main goal. I knew that by spreading the word about FA, more could be done to support FARA and the FA community.
The best catalyst for Team Kendall was Ride Ataxia. What a fun event to focus my attention and energy on! Team Kendall ended up raising nearly $39,000 for FA research and awareness. I couldn’t be more humbled and encouraged by the support that was shown to me and my fellow FA community by my friends and family. The ride exceeded my wildest expectations and I can’t wait to see how next year’s ride turns out (April 11th in Denton – mark your calendars!!)
As for my spirits, I am in a completely different place now than I was a year ago. I know that this disease is only a part of my story; it does not define me and it will not defeat me. The future holds endless possibilities for me and the rest of my FA community!
I am looking forward to starting a family with my wonderful God-send of a husband, Kyle, as we are expecting our first baby come October 29th! There is something so rejuvenating and magical about new life. I can’t wait to see what the future holds for our family.
And yes, until we find a cure for FA, my symptoms will continue to progress, but I refuse to let that put a damper on my future. I have met so many inspiring people with more severe cases of FA who are out in the world making strides to make the world a better place. When I feel sorry for myself or get discouraged, I look to them for the determination and inspiration to keep going.
A year from now, my life will be completely different again! My little family of 2 will have expanded to include our 10 month old baby boy. My mission for the next year is to keep pushing forward; to keep raising awareness for FA and most importantly – to keep living life to the fullest! You never know what hand you will be dealt, so take each moment as an opportunity for greatness. Together we will cure Friedreich’s Ataxia!