Iowa City, Iowa – RadioIowa – A 13-year-old Mason City boy who has a rare form of muscular dystrophy will serve as an honorary “Kid Captain” Saturday night when the Iowa football takes the field against second-ranked Michigan in Iowa City. Hayden Despenas was named after former Iowa football coach Hayden Fry.
His story is documented in a video posted on the U-I Children’s Hospital website. Hayden has been getting care at the hospital since 2012. Hayden’s mother, Sarah, says her son was in second grade when he was diagnosed with Friedreich’s ataxia (FA).
F-A is an inherited disease that causes progressive damage to the nervous system and shortens life expectancy. The sister of Hayden’s father, Dana, lost two kids to F-A.
U-I Children’s Hospital pediatric neurologist Katherine Mathews has been working with Hayden. Sarah recalled one of their first meetings with Dr. Mathews and how Hayden told her he wasn’t going to school because he was too tired and sick.
Hayden is now thriving in school. He’s also an honorary Mason City firefighter and is involved in a number of organizations raising awareness and funding for F-A research.
Click here to hear Hayden’s story.