| Kidney disease | Patient stories | Transplant

A Star on the Rise: Journey of a Preteen with Branchio-Oto-Renal Syndrome

May 15, 2024, 10:03am EDT

Lily Repace

Dancer, model, and actress–Lily Repace is not your average preteen. 

She was born with a genetic disorder that caused inner ear and kidney malformations. But Lily never let the diagnosis get her down. She embraced it. 

Today, Lily is living her best life as she follows her dreams. 

A 50/50 Chance

Lily Repace posing for dance class

When Lily failed her first hearing test as an infant, neither of her parents, Asha and Stephen, were surprised. 

"Lily's father has branchio-oto-renal syndrome. She had a 50% chance of inheriting it," said Asha. "That didn't make it any easier. Stephen felt guilty and I was overwhelmed. There is a learning curve to caring for any newborn baby. With Lily, I had more to learn than most new moms."

While Lily's doctor wanted her kidneys checked, it fell to the back burner when she began experiencing near-constant painful ear infections. 

"We spent so much time in the hospital. She had multiple surgeries to help with the infections. When Lily began falling behind developmentally, her healthcare team recommended we put her in an extracurricular activity. She needed more social interaction," Asha said. "At age three, we put her in dance class. She was hooked from day one."

Fast-forward three years. Lily had one last surgery to repair her inner ear bones. Her ear infections finally cleared up. She was in much less pain and able to wear hearing aids.

"When she was six, the doctor was looking at her chart and noticed she never had the ultrasound. We immediately remedied that," said Asha. "One of her kidneys was so damaged you couldn't see it on the ultrasound. The doctor diagnosed her with stage 3 kidney disease."

Are you a parent of a child with kidney disease? Join NKF Parents of Children with Kidney Disease. Parents can ask questions and share their experiences in this safe, anonymous community.

"B-positive" in the Face of Kidney Disease

Lily Repace in the hospital

When Asha and Stephen learned Lily had kidney disease, they jumped into action. 

"I couldn't donate a kidney because my blood type is incompatible with Lily's. Stephen and his family were denied due to the genetic component. We started a Kidney Walk team named "Team Lily Says B Positive”, a play on Lily’s blood type, B-positive,” Asha said. "The goal was to find her a donor and encourage our friends and family to get tested for kidney disease."

During the family’s search for a donor, they approached a well-known pediatric nephrologist to see if he would take Lily's case. 

"He determined Lily did not have stage 3 kidney disease. While one kidney didn't work, her other kidney was high functioning," said Asha. "At age six, she was in the earliest stages of chronic kidney disease. There are many steps we can take to help her maintain her kidney function."

The family breathed a sigh of relief and taught Lily the importance of caring for her remaining kidney.

"I ordered a kit for children that shows the body's organs. We put the kit together when she was six, and I explained that most people have two kidneys. She had one, but that was okay! We just need to take extra good care of it," said Asha. "She gets her kidneys checked every four to six months. We want to make sure the kidney keeps up with her growth."

Now twelve, Lily has begun taking charge of her health. With her parents' help, Lily manages her medications, water consumption, and her diet. 

"Being in charge of my medications has helped me as a person. I'm very organized," Lily said. "I'm also good at setting goals and following through, especially with my health." 

Learn how to support your child or adolescent with kidney disease.

Dancing into the Spotlight

Lily modeling on set

Dancing is a wonderful outlet that helps Lily maintain her health. 

"Dancing is great for her physical and mental health. Her dance class journals, sets goals, and works on manifestation together," Asha said. "She learned how to pay attention to how she's feeling and make choices that are good for her body." 

Lily's love of dancing has also opened the door to many opportunities. 

"We follow Lily's lead. She's modeled for Athleta and Justice. She was in a music video with a popular K-Pop artist and filmed a commercial for her hospital. All of this is because of her passion to dance," said Asha. "People are shocked to find out she only has one functional kidney and wears hearing aids."

One of those people Lily inspired was her own father. 

"Stephen didn't have hearing aids growing up. He got them as an adult but dealt with anxiety when he wore them in public. Thanks to Lily, he's learned to embrace his hearing aids. She has inspired both of us," Asha said. “We've taught Lily to live every day the best she can and to be happy. Here she is, following her dreams and inspiring many along the way." 

Asha and Stephen couldn't be more proud of their daughter.

"No matter what I’m doing, my favorite part is meeting friends and learning new things. I'm happy with every opportunity I have and all the new experiences I get to do," Lily said. "My health journey has helped me become the person I am today. I encourage other kids with health issues to try to stay positive. Do what you love. Keep going with life and try to enjoy every bit of it."

Struggling to cope with kidney disease? The National Kidney Foundation (NKF) is here to support you. Here are eight NKF programs that may help.

Related content