On March 28, 2020 Team Warrior Sisters will ride 23 miles to raise money in support of Friedreich's Ataxia research. Please support our team by reading our story below and by donating.
In September 2015, Grace was diagnosed with hypertrophic obstructive cardiomyopathy which is a thickening of the heart wall into the path of flowing blood. This life threatening condition prevents Grace from strenuous athletic activity and was a major shock for our family. Even with treatment, symptoms such as loss of balance, strength and coordination persisted leading us to schedule meetings with multiple cardiologists and neurologists in early 2016.
In June of 2016, the cause of Grace's heart condition was confirmed through chromosomal testing to be a rare genetic mutation called Friedreich's Ataxia (FA). Grace is one of only 5,000 people in the United States diagnosed with FA. This progressive, life-shortening condition affects the nerves, muscles and heart. Symptoms include Grace's heart condition (cardiomyopathy), loss of strength and mobility, scoliosis and severe fatigue due to a mutation of a protein needed to properly utilize energy at the cellular level. Cognition is NOT affected and remains fully intact. Those living with FA ultimately require the full time use of a wheelchair.
We decided to test her sister Stella, to find out if she too is positive for the disease. We were devastated to learn that in addition to Stella having Type 1 Diabetes, she also has Friedreich’s Ataxia with hypertrophic cardiomyopathy.
Grace and Stella have taught our family to live each day with integrity, as they bravely meet the challenges of being 7th and 4th grade students at Trinity Episcopal School. My daughters' physical abilities decline with each passing season. Therefore, today presents the best opportunity to use their bodies and get the most out of each experience. Both girls use their capabilities to be bright lights in our school community and wonderful sisters. They are best friends and amazing support systems for each other. We call them the Warrior Sisters.
The Friedreich’s Ataxia Research Alliance (FARA) is a small, but critical support system to families challenged by this devastating condition. A national, public non-profit, FARA unites families and provides them with the latest opportunities to participate in clinical trials and coordinate funding for the research necessary to one day develop a treatment and possibly a cure.
To that end, FARA developed the rideATAXIA program in January 2007 when Kyle Bryant began a 2,500 mile, 60 day cycling journey from San Diego to Memphis, TN in order to raise awareness and funds for FA. The program has grown into a unifying and empowering program of hope organizing family friendly rides at locations all across the country. You can learn more about rideATAXIA online at: www.curefa.org/rideataxia-blog