Just four years ago, Lily Sander, 8, could barely walk.
Now the Fort Mill girl will be digging through mud and overcoming obstacles in the hopes of bringing awareness to the disease that affects her every day.
Lily, a second-grader at Fort Mill Elementary, has Charcot-Marie-Tooth, or CMT, a progressive, degenerative disease affecting the peripheral nerves that can cause foot deformities, loss of muscle in the lower legs and difficulty with balance, according to the CMT Association.
With surgery, braces and physical therapy, Lily has come a long way and is joining 30 of her friends in running the half-mile Spartan Kids Race in Concord, N.C., April 9 in the hopes of raising awareness and funds for CMT research.
Lily said she is looking forward to “proving to everyone that I have CMT, but it doesn’t have me.”
Her family hopes to raise $5,000, which they will match, for the CMT Association, Lily’s mother Julie Sander said.
The Sander family’s efforts will help the CMT Association toward its $500,000 goal to support its mission in treating the disease, said CEO Patrick Livney, who also has CMT. He is running in the adult Spartan Race, a more than 3-mile effort.
The CMT Association also has a matching donation of up to $175,000, Livney said. The money supports the association’s efforts of combining research and pharmaceutical experts in the hopes of finding treatments and medications. Progress has been made for CMT Type 1A, which Livney said represents about half of cases worldwide.
Livney said he wants a world without CMT.
“So every kid doesn’t have to experience what I know to be a tough journey,” he said. “We have the opportunity, with treatment, to stop this disease.”
Lily’s parents said that when she was 4 years old, they noticed that Lily and her twin brother Jack started to develop differently. They saw a pediatrician, who recommended a range of specialists.
“But even those specialists didn’t know what was wrong,” Sander said.
They eventually saw a pediatric neurologist at OrthoCarolina, but they also had a hard time finding the right diagnosis and in the meantime, Lily’s feet were curving in and her symptoms were worsening, Sander said.
“She has a very rare form of a rare disease,” she said. “There are two people in the world that have been identified with her genetics.”
The pediatric neurologist reached out to Michael E. Shy, a professor in the Department of Neurology for the University of Iowa Health Care that specializes in CMT, Lily’s father Tom Sander said.
“He’s a world thought leader for CMT,” he said.
Shy studied Lily’s blood and realized he had seen her case of CMT once before, in an 80-year-old female patient that he wrote a paper on, Sander said. Shy has since written a paper on Lily as well.
With that knowledge, the Sander family finally had their answer.
“Bloodwork told the story,” Sander said. “We had the key finally to what was going on.”
The family worked with a team at the University of Iowa to create a surgical plan to return some functionality to Lily’s feet, she said. Not wanting to move to Iowa, they searched for a surgeon locally. After interviewing nearly every pediatric surgeon in town, they found one team at OrthoCarolina who had done parts of what Lily needed and could perform the six-hour surgery.
After three months in double casts and in a wheelchair, Lily was doing better. She continues gymnastics, riding bikes and other exercises to strengthen her muscles and is now putting that to the test in the Spartan Race.
“We’re celebrating that Lily can now participate and do some of these physical activities,” Sander said. “She doesn’t take no for an answer; she figures out a way.”
The race is also a chance to bring light to CMT, a disease that has a similar prevalence of Muscular Dystrophy but not nearly the awareness, Tom said.
Lily has had support throughout from friends, family and her peers.
“It’s a good story of friendship and growing up to see Lily for who she is and not for a disability or what she’s not,” Sander said.
Want to go?
Come cheer on Fort Mill resident Lily Sander and help her team fund-raise for CMT research.
What: Spartan Race
When: April 9
Where: Porter Farms, Concord, N.C.
More information: spartan.com
To donate: firstgiving.com