Fourteen-year-old Ava Little is turning her lifelong experience with Charcot-Marie-Tooth disease into community advocacy, spearheading fundraising efforts and earning regional recognition for her work. Diagnosed at age three with the hereditary neuromuscular disorder, Little is working to raise public awareness and support research for a condition that affects her nervous system, hands, feet, and legs.
Understanding Charcot-Marie-Tooth Disease
Charcot-Marie-Tooth disease, commonly known as CMT, is a hereditary disorder caused by genetic mutations that damage peripheral nerves. According to medical definitions, the condition progressively alters muscle strength and motor function in the extremities, often leading to distinct walking patterns and physical challenges. Matthew Little, Ava’s father, noted that the condition runs in their family, affecting multiple members with varying degrees of severity.
“Everybody in our family has CMT type 1A, which is a very broad spectrum in how badly it affects you,” Matthew Little said. While he and his son experience relatively mild symptoms, Ava manages a more intense presentation of the disorder. As she entered her teenage years, she faced additional hurdles regarding public perception and unsolicited questions from peers unfamiliar with the disability.
Stepping Out to Support CMT Research
Rather than remaining on the sidelines, Ava Little took an active role in advocacy. She serves as the captain of a fundraising team called “Little But Mighty,” participating in the annual Walk for CMT held at Hawk Island Park in Lansing. The event unites families, patients, and supporters to generate donations for ongoing medical research.
“I just didn’t want to sit on the sidelines anymore. I wanted to help make a difference, as well as find a cure by trying my best to help get donations and help spread awareness for Charcot-Marie-Tooth,” Ava Little said. Her father expressed strong support for her dedication and leadership within the community.
Recognition and Community Impact
Ava’s advocacy work recently earned her a Go-4-It Award from Local 4, highlighting her efforts to educate the public and build confidence among individuals living with disabilities. “I was very shocked. I was not thinking at all that I would receive this award, but it truly, it just made my day, and I’m incredibly honored to be receiving it,” she said.
Through public outreach and participation in events like the CMT walk, Ava hopes to shift perceptions about physical disabilities. She emphasizes that individuals with CMT share the same capabilities and aspirations as anyone else, noting that shared experiences through support networks help rebuild personal confidence.