Name: Grace Smith
Age: 10 years old
Where do you call home? Austin, Texas
Education: I am in 5th grade.
Who do you live with? I live with my Mom Susan, Dad Scott, sister Stella (7yrs) and our dog Benji.
What's a typical day for you? In a typical day, I go to school from 9:30 - 2:00. I have a shorter schedule than my classmates and sister, because I get easily fatigued. On weekends, I can only do one big outing or event before getting tired. But I love being at home with my family, and have learned how to conserve energy while also having fun. I go to bed at 8:30, which also helps me have enough energy to enjoy the next day.
How long have you known you are living with FA? I was diagnosed when I was 8 years old. The first thing the doctor discovered was a murmur in my heart that turned out to be Hypertrophic Obstructive Cardiomyopathy. At the time of my heart diagnosis, I did not have visible FA symptoms. About 10 months later though, I saw a neurologist because my balance and coordination had become pretty poor. After noticing that I also had high foot arches, no reflexes, and poor proprioception, he immediately thought I might have FA. It was then confirmed it with a genetic blood test.