For 14-year-old Ava Little, living with a rare genetic disease has meant facing challenges from a young age.
But rather than letting the condition define her, she is using her experience to help other families and raise awareness.
Little was diagnosed with Charcot-Marie-Tooth disease, also known as CMT, when she was three years old.
“I was diagnosed at three years old, and ever since then, it’s kind of always been a part of my life,” Little said.
CMT is a hereditary neuromuscular disorder caused by genetic mutations that affect the nervous system.
The condition can affect the hands, feet, and legs and can cause problems with walking and muscle strength.
For Little, it has also meant dealing with unwanted attention.
“As I’ve entered my teenage years, just the way I walk, a lot of people tend to notice and aren’t really considerate when it comes to them asking why I walk like that or why I do things differently,” Little said.
Her father, Matthew Little, said CMT affects several members of their family.
He said he and his son have relatively mild symptoms, while Ava experiences the disease more intensely.
“Everybody in our family has CMT type 1A, which is a very broad spectrum in how badly it affects you,” Matthew said. “My son and me have it very mild. Unfortunately, Ava suffers from it just a little bit more intensely.”
Rather than keep her struggles to herself, Ava has made raising awareness and supporting research part of her life.
“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 said.
Ava is the captain of a team called “Little But Mighty,” which is taking part in the annual Walk for CMT on Saturday, Sept. 26, at Hawk Island Park in Lansing.
Her involvement has made her father proud.
“Her attitude towards raising money for this, it makes me proud,” Matthew said. “To know that she wants to be so involved.”
Ava’s determination also earned her a Go-4-It Award from Local 4.
“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.
Ava hopes her story will encourage other people with CMT and other disabilities not to let physical challenges prevent them from pursuing the things they want to do.
“There are just so many people with CMT that are just such positive and happy people,” Ava said. “Even though we might struggle physically, it doesn’t mean that we aren’t capable of doing anything that anyone else can do, and if anything, it makes us stronger.”
Ava said participating in the CMT walk has also helped her regain confidence and connect with other people who understand what she is going through.
