Thirteen-year-old Anna loves nature, school and the arts, especially theater and playing percussion in the school band. She’s also extremely resilient: Three years ago, she became critically ill and needed a kidney transplant. Her family’s journey is proof of how the organization called the National Kidney Registry is a remarkable, lifesaving resource for patients in Anna’s situation.

When she was 10 and had just finished fourth grade, Anna suddenly became sick. At first, her parents, Mollie and George, thought it was a bad stomach flu. But when she didn’t improve, Mollie took Anna to the pediatrician, who sent her to the local ER. Seeing that Anna was very sick and also anemic, the doctor knew that Anna needed immediate critical care, and Anna was flown via helicopter to Children's Hospital of Philadelphia (CHOP). It was an alarming development for her parents, but Anna says she wasn’t scared, exactly: “I felt so bad, my brain didn’t have room for anything else.”

CHOP doctors determined that Anna was in kidney failure, meaning her kidneys were no longer adequately filtering waste and fluids from her blood. She was quickly put on continuous dialysis to take over the work of her kidneys. Tests revealed that Anna had a very rare autoimmune disease, ANCA vasculitis, which causes the body to produce antibodies for an illness that doesn’t exist. Instead, the antibodies mistakenly attack healthy tissue — specifically, in Anna’s case, the antibodies had damaged her kidneys. Because kidney damage cannot be reversed, she would need a kidney transplant.

A wait to get healthy enough for transplant

While Anna was inpatient at CHOP, Mollie stayed with her. “I barely left the room,” Mollie says. They played hangman, watched TV or read. Anna’s younger brother, George, visited every day. Whenever the child life specialists came with educational games or fun activities, “They always included him, which helped us stay close through the toughest of times,” Anna says.

Once Anna was able to go home, she still needed to travel to CHOP three or four days a week for outpatient dialysis — and the team from the Child Life, Education and Creative Arts Therapy Department made a big difference during those visits. “A teacher from CHOP’s Hospital School Program, Julia Maher, helped her continue her education,” Mollie reports. “Keara Gordon, Emma Deesing, Colleen Szkudlapsc and the entire child life team brought Lego builds, art projects and fun surprises to help pass the time on the machine. The dialysis team became like family. They took the very best care of Anna and supported the whole family in so many ways!”

Nonetheless, the treatment took a toll on Anna, leaving her tired and nauseous even when she was home. She missed much of fifth grade and the first half of sixth grade. The family learned to be more spontaneous in their plans. “We didn’t know in advance how she would feel on any particular day,” Mollie explains. “We would be on the lookout for windows when she did feel good. We would not plan ahead, just seize the moment. She feels good? OK, let’s do an activity as a family!”

After a year, when it was certain that the ANCA was well controlled, the family began the search for a kidney donor.

The National Kidney Registry: ‘A brilliant solution’

Anna’s parents were both evaluated as donors. “We were counting on Mollie being a match,” says George, “because they have the same blood type. But blood type is only one factor.” Unfortunately, neither was a good match. 

The family turned their hopes to the National Kidney Registry (NKR), a paired kidney exchange program that CHOP participates in through a partnership with Penn Medicine. It’s a system for families who know someone willing to be a donor, whether it’s a family member, a friend or anyone willing to help — but they aren’t a match for the patient in need. The person donates a kidney to another recipient, and in exchange the loved one who needs a kidney gets one from a compatible donor. Mollie says she came to realize that not only was this program their saving grace, “You’re really saving two lives!”

In June 2024, Anna’s dad, George, donated his kidney, which went to someone in the system. Anna was listed, and in November 2024, she received a wonderfully matched kidney in a surgery performed by Ronald Parsons, MD, at CHOP.

“The NKR saved us a lot of heartache,” says George. “It’s a brilliant solution to a problem. The NKR implements a comprehensive screening process for donation and receiving. It creates the best match possible. Plus, they make the process super simple. They’re really compassionate about the whole situation. You’re guided through every step. They took care of everything — they set up and coordinated everything. There’s no pressure, you can opt out at any time.” For CHOP families, all appointments for donor evaluation can take place next door at Penn Medicine with their experienced living donor team, and there are other NKR centers around the country where donors can be evaluated.

Today, Anna is full of gratitude and joy. She is happy to be back at school full time, participate again in music and theater, and spend time with her friends. “Now that I have my kidney transplant, I can do all the things I love again,” Anna says. “And it's so much fun! I love beating a drum, singing a tune or acting in front of an audience.”

Because donated kidneys generally last between 15 and 20 years, pediatric patients will most likely need multiple transplants in their lifetime. In February 2026, Mollie donated her kidney into the NKR system to receive a voucher for Anna. So when Anna needs her next transplant, she can find another matched living donor, thanks to the NKR.

“The NKR has given me a second chance at life,” Anna says enthusiastically. “And every time someone donates, they’re giving the gift of a new life.”