When Lily was “graduating” from care at Shriners Children’s, she wanted a way to remain involved with the place that had been part of her life for 20 years. As part of Shriners Children’s 100th Anniversary celebration, Lily’s dream was brought to life through the Patient Alumni Network (PAN), where past and present patients come together through mentoring, volunteering, fundraising and more.
Care that inspired success
Lily was born without a fibula, the outer thin bone that runs from the knee to the ankle, in her right leg. She had surgery to amputate her right leg when she was 7 months old. She and her family made the four-hour trip to Shriners Children’s Lexington, where she was a patient of pediatric orthopedic surgeon Vishwas Talwalkar, M.D., starting when she was a toddler. The Pediatric Orthotic and Prosthetic Services team fit her with prosthetic legs throughout her 20 years as a patient.
Lily understood she had something many other kids with limb differences did not. “Even when I was little, I knew there were kids similar to me who didn’t have the same outcomes,” Lily said. “My doctors were careful to give me what I specifically needed to do the things I wanted to do. I saw other kids that didn’t get that and maybe weren’t as mentally healthy and didn’t feel as capable because
Lily graduated from nursing school in 2021 and now works in a trauma surgical intensive care unit for adults. Thanks to her time at Shriners Children’s, Lily knows just how critical patient-centered care can be for positive outcomes. “I plan to carry forward the same holistic care that I got at Shriners to my patients,” she said.
Giving back and forming bonds
Lily also wants to keep giving back to Shriners Children’s.
“Because everyone at Shriners Children’s Lexington was so encouraging to me to pursue what I wanted and gave me the tools I needed to do it, it gave me a lot of confidence,” she said. “I played sports. I danced. I’m a nurse now. That’s a very physical job. I might not have had the confidence to do those things without Shriners Children’s.”
In 2018, Lily was named a National Patient Ambassador for Shriners Children’s and has participated in a variety of projects for the hospital system. The Patient Alumni Network, which officially launched this year, is her latest project, and she serves as president. It’s a way for patients to bond over their shared experiences, feel as if they are still part of the Shriners Children’s family and look for ways to help the next generation of Shriners Children’s kids.
“Whether you were a patient of Shriners Children’s yesterday or 75 years ago, we know you have a wealth of talents, knowledge, passion and experience to give. This network was created so that we can give together,” Lily shared. “We hope each alum will bring their big ideas to the group and together, we can make them happen!”
Meet the PAN leadership team
Lily is joined by a team of tireless advocates and former patients who lead the work of the PAN.
Allison and Jory, who were both treated at Shriners Children’s Florida, are a husband-and-wife team who work with the Sudan Shriners in New Bern, North Carolina. They take great pride in fundraising and helping spread the word about the amazing care provided at Shriners Children’s.
Amy is a former patient of Shriners Children’s Chicago,where she started treatment for hip dysplasia when she was 1 ½ years old. She had 20 years of casting, traction, surgery and monitoring. She and her husband (a Shriner), volunteer annually at the Shriners Children’s Open golf tournament, held in Las Vegas, Nevada, and support their local hospital, Shriners Children’s Greenville.
Ronald “Dennie” was treated at Shriners Children’s locations in both Philadelphia and St. Louis for scoliosis, which was corrected through diligent brace-wearing. “Thanks to the work of Shriners Children’s, I was able to serve in the Army for over 27 years.” A proud Mason and Shriner, Dennie served as the Potentate (president) of Jamil Shriners in 2021.
Jan spent 15 years being treated for proximal focal femur deficiency (PFFD) of the right hip between Shriners Children’s Hawai’i and Shreveport locations, including surgeries and intensive physical therapy. She says, “Even though my leg length discrepancy was
improved by age 16, being dismissed from care at that point was a very sad day.” Jan is a professor at the University of Nebraska Kearney in the department of Communication Disorders. (See page 12 for more about Jan.)
Seth was treated in 2017 at Shriners Children’s Philadelphia for scoliosis. His care included an innovative operation developed at Shriners Children’s called vertebral body tethering. “Since my
treatment at Shriners Children’s, I’ve resumed playing sports, most notably golf.” Seth just started his freshman year of college and joined the golf team. He served as a National Patient Ambassador from 2021-2022, traveling all over the country representing all patients from Shriners Children’s.
“The Patient Alumni Network was created by the Shriners Children’s patients of yesterday because no one knows better than us how important holistic health, confidence and the ability to reach toward goals are,” said Lily.