Lily has been coming to Shriners Children’s Lexington nearly all her life.
As a baby, she visited for the first time, and recently at 21, she had her last appointment.
Lily was born with fibular hemimelia, meaning she did not have a fibula, which is the outer leg bone that runs from the knee to the ankle.
When she was 7 months old, Lily had an amputation of a portion her right leg and found that there were no doctors in her hometown who knew how to treat her condition. There also was not a facility where she could have prosthetic legs constructed and fitted as she grew.
“We started coming to Shriners [Children's] because of the expertise,” Lily said. “There wasn’t a specialist for kids like me in my hometown.”
When she was 18 months old, Lily came to Shriners Children's. She was a patient of Vishwas Talwalkar, M.D., a pediatric orthopedic surgeon at Shriners Children's Lexington.
She also was cared for by the Pediatric Orthotics and Prosthetics Services department staff at the medical center, who fit her with various prosthetic legs throughout her life.
At one point, Lily was visiting Shriners Children's four or five times per year, and as she grew, she often needed a new prosthesis every year. She has also had five surgeries to straighten the angle of her knee.
In 2018, Lily became a National Patient Ambassador for Shriners Children’s and spent the following year participating in a variety of projects to support the healthcare system.
“I became a much better communicator and I’m able to express myself more meaningfully because of my experience as a Patient Ambassador,” she said.
As her time as a Shriners Children's patient came to a close, Lily said she felt like she was leaving behind a family.
“Dr. Talwalkar, my care managers, my prosthetist, they’ve all been there for me as I’ve grown up. It’s kind of sad to be leaving. They’re like my family here, but I’m 21. I think it’s time to stop seeing my pediatrician,” she said with a laugh.
Even when I was little, I knew there were kids similar to me that didn’t have the same outcomes. And I don’t just mean medically. I mean they may not have the same quality of life and confidence that I’ve gained because of my time at Shriners. I want to give back to those kids.
Lily may no longer be a patient, but she’ll be sticking around Shriners Children's in a different way. She looks forward to the opportunity to get back to volunteering at the hospital, being a support for other patients and helping with more of the “behind the scenes” activities.
“Even when I was little, I knew there were kids similar to me that didn’t have the same outcomes,” Lily said. “And I don’t just mean medically. I mean they may not have the same quality of life and confidence that I’ve gained because of my time at Shriners. I want to give back to those kids.”
One way Lily plans to do that is in her career.
She recently graduated with a nursing degree and wants to provide the type of care she received at Shriners Children's to her own patients.
“My experience at Shriners certainly inspired me to go into the medical field,” she said. “I don’t plan on going into orthopedics, but I plan to carry forward the same patient-centered and holistic care that I got at Shriners to my patients.”
During her final appointment, Lily’s mom, Eve, was on a video call because she couldn’t attend in person.
“Shriners has been like a family to us,” she said tearfully. “I could always trust that she was getting the best care she could possibly get, and that has meant everything.”
Lily is excited to be an early member of the Patient Alumni Network. The Patient Alumni Network was formed in 2022 as part of Shriners Children's 100th Anniversary Celebration. The goal of this new network is to connect former patients with each other and provide opportunities for them to share their stories and accomplishments with other patients, Shriners, donors and the public.
