In November 2020, Maggie Barnidge, then a freshman at the University of Notre Dame in South Bend, Indiana, developed a cough, fatigue and a swollen stomach. For Maggie, who has cystic fibrosis (CF) — a genetic disorder in which a faulty protein in the body makes thicker and stickier mucus that can lead to blockages around organs and in the small ducts of the liver — seemingly routine illnesses like this could require extra interventions, such as antibiotics. In this case, Maggie’s older sister, Isabel, also a Notre Dame student at the time, drove her to the emergency room. There, Maggie was diagnosed with pneumonia, as well as a failing liver. She would need a liver transplant.

Maggie, who is from Virginia and was diagnosed with CF when she was 4 months old, had been a patient at Johns Hopkins Children’s Center since she was 12. Because of the highly complex case that Maggie presented, the Children’s Center sent a medevac helicopter to transport her to Baltimore, where within two months she underwent a successful liver transplant, performed by Elizabeth “Betsy” King, surgical director of pediatric transplant at the Children’s Center.

Liz and Ed Barnidge, Maggie’s parents, praise King for her knowledge, confidence and ability to connect with their daughter. This convinced them to continue Maggie’s care at the Children’s Center, even though there is a hospital with a large liver transplant center located near their home in Arlington, Virginia.

“Betsy King was the reason we decided to stay,” says Liz, who has a background in social work and preschool education. “She was so good with Maggie and so reassuring and so smart. And it was the best decision because the nature of the care that was being delivered to Maggie was so personal and so thoughtful.” King also collaborated well with Maggie’s longtime pulmonologist at Children’s National Hospital in Washington, D.C., and involved Liz, Ed and Maggie in the decision-making process for Maggie’s care.

The Barnidges also praise Maggie’s nurses, who made Maggie laugh and lifted her spirits during some difficult days. This was especially needed, as Maggie, who celebrated her 19th birthday during her 72 days in the hospital, was treated during the height of COVID-19 restrictions, which meant that her parents were the only people allowed to visit her.

To show their gratitude, the Barnidges wanted to do something to support the Children’s Center. After consulting with King for ideas, they decided to start the Peds Pebbles Endowment to help with nonmedical expenses that pediatric transplant patients and their families might incur before, during and after a transplant. The Barnidges are familiar with these expenses: Ed and Liz; their sons, Jake and Luke, now 18 and 16; and occasionally Isabel, 24, stayed in an Airbnb in Baltimore for some time while Maggie was at the Children’s Center.

The goal of the endowment — whose name was inspired by the Stepping Stones Fund, a similar fund at Johns Hopkins Medicine that supports adult transplant patients — is to ease the stress that families might experience from some of these out-of-pocket costs.

“The idea for this endowment is to hit people in their moment of need with simple things like a place to stay for the night, a meal, free parking, a birthday present — just nice things that families might not have funds for,” says Ed. The fund will also support celebrations in the Pediatric Liver Transplant Center, such as Liver-versaries. The Barnidges want providers and social workers at the Children’s Center to use the endowment to support families as they see fit. 

Today, Maggie — who continues to take medication that helps manage her CF symptoms — is doing well. She is set to graduate from Notre Dame in May with degrees in Spanish and pre-health, the university’s premedical program, and she plans to go to medical school. Through her treatment for CF, she has found a few role models, including Sara Kathryn Smith, medical director of pediatric liver transplantation at the Children’s Center, who herself has undergone multiple liver transplants.

“Maggie takes a lot of encouragement from Dr. Smith and looks up to her as an example,” says Liz, adding that Maggie has already spent time working on CF-related research with a physician at a children’s hospital in Indiana, as well as shadowing a pediatric oncologist at the Children’s Center. “She has these examples of these incredible women doing incredible things, and she says, ‘I’m going to do that too.’”