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Lily Ready to Treat Patients with Same Type of Care She Received

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, Kentucky

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.

Patient Alumni Network, meet Jacob

Former Shriners Children's patient, Jacob helps us launch our new Patient Alumni Network which allows former patients to connect and stay involved with Shriners Children's, sharing their stories. Learn more: http://shrinerspatientalumni.org
View Transcript

Jacob Pacheco: My name is Jacob Pacheco. I am a former Shiners Children's patient. I live in Long Beach, California, Southern California, where the weather and the beaches are nice.

I'm deeply honored to be part of the Patient Alumni Network celebrating Shiners Children's 100 year anniversary.

I was born with a physical disability called spastic cerebral palsy. I was diagnosed at six months of age, and so my family and I basically lived with this condition throughout my entire life. But when I was younger, my condition got pretty severe and my family and I were looking for some answers and we happened to find Shiners Children's, and we came here when I was about six years old, all the way through until I was about 16.

The rehabilitation isn't a straight path. It's really important to take the lessons you learn at a young age and apply them to your later life as an adult. I actually became a professional surfer, a speaker, that I get to travel the world, and kind of promote this message of inclusion, community, and love. I've learned that those lessons never apply moreso than in the ocean as a surfer, because a wave in the ocean is going to come at you one way or another, and you have to learn how to deal with it. You have a lot of different choices to make. You can either let life happen to you, you can go around different obstacles and challenges, or you can ride them out and see how it goes. I prefer to ride them out or move around them because I think that's a little bit more fun, but I think those life lessons are very, very important that we can all apply to our own journeys. It leads to a lot of fulfillment in inner peace.

What makes Shiners Children's so special is the amount of support and care that you get when you walk through those doors, not just from the doctors, but from the support staff, the Shriners that are there to greet you in the waiting room, the nurses who are there to help take care of you, that's what I think differentiates the hospital more than most.

To any patients or families who are inside Shiners Children's right now, I have one thing to say to you. One step at a time, one day at a time. I know it might be hard right now, but it will get better. Just keep a smile on your face and keep moving forward.

Are you a previous Shiners Children's patient? If you are click them link below to join our network.

Meet Lily

Lily has been a patient at Shriners Children's Lexington almost since the day she was born. She had an amputation on her right leg when she was just 7 months old. In 2018, Lily became a National Patient Ambassador for Shriners Children’s and spent many years finding ways to give back to the healthcare system. She pursued a career in healthcare in large part because of her experience with Shriners Children's care.

Lily with young boy at baseball game

Lily built a close connection with everyone on her care team and had lots of fun serving as a National Patient Ambassador.

Lily onstage

Lily and her mom, Eve, say the team at Shriners Children's Lexington always felt like a family. Although she has aged out of the system, Lily is excited to help launch the Patient Alumni Network in recognition of Shriners Children's 100th Anniversary.

Lily and Ryan

In 2018, Lily joined Riley as a National Patient Ambassador for Shriners Children’s and spent the following year participating in a variety of projects for the hospital system.

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