Kailey Newcity lives with Friedreich ataxia (FA) and strives to shine a spotlight on this rare disease. She has shared her story with PTC to help spread awareness about FA.
“Clumsiness has always been a part of my life. Friends & family joked when I was growing up that my name should’ve been Grace.
At age 23, I began experiencing some symptoms that were very obviously something besides “just Kailey stuff.” I started having silly falls, racing heartbeat, extreme fatigue. This began a four-year long journey for answers. Two years in, I thought I had my answer after endless bloodwork, MRI’s, EMG’s, a spinal tap, and genetic testing that insurance deemed “not medically necessary.”
For two years, I thought I had a different (less severe, non-life shortening) neuromuscular disease. Finally in 2017, a doctor at the MDA correctly diagnosed me with Friedreich’s Ataxia. My life has been a rollercoaster of symptoms, medication trials, new friends, and doctor’s appointments ever since.
I am very lucky to be late diagnosed, as I was able to live a relatively ‘normal’ life for 23 years. I had a few years of denial & grief of the life I had planned for myself before I knew what FA was. I have met some of the greatest people in the world through this community and I am lucky enough to be on a treatment for FA. I will continue to raise awareness and funds and hope that I am around to see the end of this ugly disease. Cure FA!
I am extremely grateful for this incredible community and the people that have become my family through FA. We share a bond that nobody wants but without the understanding and support of this FAmily, I would be very lost.”