Read Isabelle’s story of rare autoimmune disease, 20 months on dialysis and a life-changing kidney transplant at Norton Children’s.
By: Norton Children’s May 11, 2026
By: Norton Children’s
May 11, 2026
Estimated reading time: 8 minutes
When Isabelle Black started running fevers after her 7th birthday, the explanation seemed simple: Strep throat was going around.She tested positive and took antibiotics. The fever went away — only to return again and again over the next few months. After four rounds of antibiotics, Isabelle started losing weight and didn’t have much of an appetite. Her mom, Amanda, knew something was wrong.
“I told my husband, ‘I’m tired of this. I don’t know what it is, but I’m taking her to the emergency room.”
After running some bloodwork, doctors at Norton Children’s Hospital shared news Amanda never saw coming: Isabelle was in kidney failure.
“I thought they were going to say she needs her tonsils taken out, or maybe her appendix burst, or she needs IV antibiotics,” Amanda said. “Never in a million years would I have ever guessed.”
Isabelle was admitted to the hospital that night, and the Norton Children’s Nephrology team started working quickly to try to understand why a 7-year-old’s kidneys were failing.After a few days, a biopsy confirmed the diagnosis: Anti-neutrophil cytoplasmic autoantibody (ANCA) vasculitis, specifically granulomatosis with polyangiitis (GPA) — a rare, autoimmune disease that attacks small blood vessels, such as in the kidneys, cutting off blood flow. Only about 1 in a million children are diagnosed with it each year.Looking back, pediatricians had missed signs of vasculitis, like hip pain and frequent nosebleeds, but Isabelle’s condition was so rare that most providers never encounter a case during their entire career.
“Other kids with the disease often get misdiagnosed and keep getting sicker and sicker,” Amanda said. “Norton [Children’s] immediately diagnosed it and immediately took steps to stop the damage the autoimmune disease was doing. But unfortunately, it was too late for her kidneys. So much damage had been done.”
Isabelle’s care team wanted to see if her kidneys would recover — and after a few months without adequate progress, it was clear that she was going to need a kidney transplant.
Isabelle had to be on hemodialysis (using a machine to filter the blood outside the body) for nearly two years. A trial of peritoneal dialysis (a process that uses the patient’s abdominal cavity to filter blood) was not successful, causing infection and requiring additional surgeries. With Isabelle too sick to attend school, Amanda quit her job and started homeschooling her daughter.She missed second and third grade. Her diet was tightly restricted. She couldn’t swim or take showers, and normal life was on hold.
But Isabelle, for the most part, just kept going.
“As parents, we felt a lot of anxiety, but Isabelle remained so resilient during every hurdle she faced,” Amanda said. “Even when it was time to talk about a kidney transplant, she handled it with bravery.”
Once Isabelle was placed on the transplant list, Amanda was evaluated as a potential living donor. However, the transplant team advised that if Isabelle needed another kidney later in life, the wait for an adult on the transplant list could be up to five years, and Amanda might be needed more then. Since Isabelle was a child, a donor was found quickly. The family learned it was actually someone they knew.The girlfriend of Isabelle’s oldest brother had contacted the hospital anonymously on her own and started the donor process without telling anyone.
“I tried to talk her out of it,” Amanda said. “I was like, ‘You’re crazy. Are you sure you want to do this?’ And she said, ‘It’s what I want to do. It’s what I should do.’”Isabelle’s donor is now her sister-in-law.
“When I really think about how everything came together, it’s more than I can even comprehend sometimes,” Amanda said.
Jan. 14, 2025, was surgery day, with family supporting both Isabelle and her donor filling the waiting room. Before Isabelle received her new kidney, her transplant surgeon, Eric G. Davis, M.D., general surgeon with Norton Surgical Specialists, walked over to check on her kidney donor’s surgery, and said the kidney looked “perfect” for Isabelle, according to Amanda.
The kidney was brought to Isabelle’s operating room, and as soon as it was connected, it started working and producing urine immediately.
In the waiting room, Amanda watched Isabelle’s MyChart electronic medical records updates on her phone. As the blood work updated every 15 minutes, she watched in real time as the values that were dangerously elevated for nearly two years started to fall.
“I just thought, this is amazing,” Amanda said. “It’s a miracle. It worked instantly.
“I sat in the waiting room that day and I remember praying — I had prayed so many times — and I asked God to take this away from her, just perform a miracle. And I just felt Him say to me, ‘You’re getting your miracle today.’ So, from that moment on, I feel very strongly that it’s my job to share her story.”
Isabelle just turned 10 and celebrated every minute of it. She’s back in school for fourth grade, and doing gymnastics, cheerleading and tennis. As a natural extrovert, she isn’t shy about sharing what she thinks — including her own health story.
In March 2026, Isabelle spoke to a crowd at the Norton Children’s Radiothon, and at the National Kidney Foundation of Kentucky’s annual gala.
She also wants to be a nurse — and her Norton Children’s Nephrology team keeps making a case for becoming a pediatric nephrologist, pointing out that the field needs more of them. Amanda is on board with that vision.
“Who would be better at that job than someone who knows exactly what it’s like to be a patient?” Amanda said.
The Norton Children’s Nephrology team, including pediatric nephrologists Siddharth A. Shah, M.D.; Malavika Prasad, M.D.; and Minh Dien Duong, M.D.; and the Norton Children’s Hospital nurses were a constant source of support.
“I completely 100% believe that they saved her life. Going to Norton Children’s Hospital and being under their care was the best decision that we ever made,” Amanda said. “They never made me feel bad for calling them in the middle of the night. They were always there for me no matter what happened. And they made me feel like they were treating Isabelle like they would treat their own child.”
There is no cure for Isabelle’s autoimmune disease, and she keeps up with regular doctor’s appointments and lab work. Life after a kidney transplant requires a strict routine.
“We live life every single day by the clock, because Isabelle’s medications must be taken every 12 hours,” Amanda said. “We have alarms on our phones, and we will stop what we’re doing to take meds.”But it’s a routine that works for the family, and Amanda can’t wait to see what’s in store for her brave, resilient daughter.
“After bringing her through this,” she said, “I know God must have some sort of big plan for her.”
When a child receives a diagnosis of end-stage renal disease at such a young age, every milestone becomes profoundly significant — not just from a medical standpoint, but also emotionally for the entire family. This young child spent nearly 20 months on dialysis after her diagnosis at age 7. She has incredibly devoted parents, who confronted significant challenges with determination every day.
“The first anniversary of a kidney transplant is especially meaningful, especially after coming from prolonged dialysis. It marks a transition — a milestone that signifies so much more than time passed,” Dr. Shah said.The year following the transplant is filled with careful monitoring, medication adjustments and understandable anxiety for children and their families. Reaching the first-year successful transplant anniversary reflects that there is a meaningful shift toward stability and a better quality of life.
“From a clinical perspective, this anniversary is also a testament to the hard work and dedication of the child, family and the entire medical team,” Dr. Shah said. “It offers us a glimpse into the changes a transplant can bring to a child’s daily life — creating more space for growth, participation in school and engagement in activities that may once have been overshadowed by illness.”
At Norton Children’s, our pediatric kidney transplant team is committed to supporting our patients and their families every step of the way. We understand that transplant care is never the task of a single individual; it’s a collaborative effort, teamwork and a long-term partnership. Isabelle’s anniversary reflects not just survival but also strength, resilience and hope for a better future.