Always Up for a Challenge

Nine-year-old takes on obstacle course to raise awareness about CMT

Nine-year-old Lily Sander doesn’t remember life without Charcot-Marie-Tooth disease (CMT), but she has never let it hold her back. After undergoing major foot surgery three and a half years ago to correct the extreme curving of both feet caused by CMT, Lily had to learn how to walk again. She now walks with the help of leg braces and has been thriving. 

“‘I have CMT, but it doesn’t have me,’ is her motto,” says Lily’s mom, Julie Sander. 

Last year, Lily participated in the Spartan Kids Race, an obstacle course for children ages 4 to 14, in conjunction with the Charcot-Marie-Tooth Association (CMTA). Lily, along with a group of her friends, conquered the half-mile course even though it was cold, windy and very muddy.

“The best part was that she experienced something she hadn’t done before,” says Sander. “She’s big on pushing herself, so the thrill of achieving this goal was the highlight for her.”

Lily will challenge herself again this year at the Spartan Kids Race on Memorial Day in Fort Mill, S.C. Her father and two brothers will join her, and she hopes even more friends will race with her this time, since it’s closer to their home. “We’re hoping to make it a community event,” says Sander.

The 2K course (the shortest distance offered) is triple the distance of last year’s race, but Lily is stronger and in better condition. “We believe staying active has been instrumental in helping to keep her disease from progressing,” says Sander.

Lily has participated in gymnastics for two years, and she joined a competition team in January. She goes to training one day a week, but she plans to increase her training days as her body adapts. There are some things she can’t do, her mom says, but Lily focuses on her strengths and dreams of becoming an Olympic gymnast. She has the drive to do it, and she doesn’t like to be told she can’t do something. “So much of what Lily teaches people is that the majority of limitations we have exist only in our heads,” says Sander.  

When Lily was first diagnosed with CMT, it was difficult for her and her family to find support. “It was like being on an island,” says Sander. CMT affects about one in 2,500 people in the U.S., but there are many different types of the disease so it’s not as well-known. The Sander family found support and a community through MDA by attending their local MDA Care Center and signing Lily up for this year’s MDA Summer Camp.

One of the Sanders’ goals in participating in events like the Spartan Kids Race is to bring attention to CMT and help others living with the disease. “We’re trying to bring awareness because awareness drives funding, funding drives research, and research and drug development can dramatically impact the lives of people with CMT,” Sander explains. “We want CMT to become a household name.”


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