Lily is Showing CMT Who’s Boss: Her Journey with the Levine Children’s Hospital
Between running a blossoming tutoring business and raising money for kids like her, Lily Sander is flourishing. But it’s not always easy.
Now 11 years old, she’s been treated for Charcot-Marie-Tooth disease (CMT) and hereditary neuropathy with liability to pressure palsies (HNPP) for nearly half her life. Basically, what it all means is she has a lifelong condition that damages the nerves in her arms and legs; it can lead to limb deformities and weak, imbalanced muscles.
When Lily first received her diagnosis, her family knew they wanted the best care – they’d even travel for it if they had to. Fortunately for the Sander family, who live near Charlotte, all roads pointed to Levine Children’s Hospital and Virginia Casey, MD a pediatric surgeon at OrthoCarolina. “I can’t imagine anywhere else I’d want her to be,” says Julie, Lily’s mom.
A few years ago, Lily’s feet curved in, making it impossible for her to walk. Surgery was the best way to correct the issue, and thanks to a special partnership, Lily received care from a team as relentless as she is. There are many reasons the pediatric orthopedics program at Levine Children’s Hospital stands out. At the top of the list is our one-of-a-kind collaboration with OrthoCarolina, which brings together some of the region’s top surgical and orthopedic services.
While we’re strong on our own, we’re even stronger together. We’re continually teaming up to enhance patient care and improve orthopedic surgeries by making them safer, faster and easier on kids like Lily. Through every stage of the process, the Levine Children’s Hospital and OrthoCarolina teams combined strengths to make Lily’s surgery a success. “Her case really exemplifies how well we all work together,” adds Dr. Casey.
After giving her all in physical therapy, Lily has more than bounced back and was even invited to join a competitive gymnastics team once she’d recovered. “She got to live out a dream we never thought she was going to,” says Julie. Lily’s disease is progressive, which means she’ll likely need more surgeries as she continues to grow. But for now, leg braces, exercise and follow-up visits with her care team are all she needs to keep moving forward.
Lily to date has participated in not one, but two Spartan obstacle races, raising money for CMT research and giving a voice to kids like her. When she’s not fighting for a cure, she’s focused on giving back in other ways, such as by tutoring her classmates and baking for her loved ones. No matter what she decides to take on next, Lily has what it takes to be stronger than her diagnosis. But she says it best: “I have CMT, but CMT doesn’t have me.” You can help children like Lily by donating this year during our Secret Santa event below and give back to this wonderful hospital with have within our community.
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