Cora’s Story: A Family’s Journey With a Rare Kidney Condition
Cora’s Story: A Family’s Journey With a Rare Kidney Condition
Reviewed by Arthur Lee, MD
Reviewed on
When Cora was little, her parents noticed that during potty training her urine was a little cloudy. Their pediatrician saw no red flags. But everything changed in kindergarten, when 5-year-old Cora came home from a cross-country meet and peed blood.
“It was horrifying,” says her mother, Courtney.
They saw a pediatric urologist not far from their home in Brick, N.J., who did some imaging and lab studies and said Cora was likely just constipated. But urine tests showed calcium oxalate, which Courtney knows cause kidney stones. Her instincts told her something wasn’t right and led her to call Children’s Hospital of Philadelphia (CHOP).
An Important Diagnosis
CHOP is home to the Pediatric Kidney Stone Center, a program dedicated to evaluating and treating children with all types of kidney stones using coordinated, child-focused care.
At their first appointment at CHOP, after undergoing an ultrasound and CT scan, nephrologist Arthur Lee, MD, asked detailed questions about the family’s medical history. He immediately ordered genetic testing, something their local urologist hadn’t recommended.
The imaging tests were striking: “Cora was pretty much riddled with kidney stones, like dozens,” says Courtney.
And the genetic testing showed why: Cora was a carrier of a gene that causes nephrocalcinosis (a buildup of calcium in the kidneys) and kidney stones.
Learning to Live With a Lifelong Condition
There is no cure for Cora’s genetic condition, but there are effective ways to manage it. The Pediatric Kidney Stone Center brings together nephrologists, urologists and nutrition experts who work as a team to diagnose kidney stones, treat symptoms and help families prevent future stones.
Dr. Lee and the team acted quickly to protect Cora’s kidneys and improve her quality of life. She was started on medication to help keep stones small and moving through her system. At first, she struggled with side effects, like low energy and low blood pressure, but the CHOP team worked closely with the family to adjust the dose. The team also helped her build habits that keep her healthy, like eating a low-sodium diet, drinking large amounts of water every day and using a timed reminder watch to go to the bathroom regularly.
“We worked together until we found the right dose and routine,” says Courtney. “We’ve done really well kind of figuring out what makes sense for her.”
For a long time, Cora avoided running, jumping and other physical activity because she was afraid it would trigger bleeding or pain. As her treatment stabilized, her confidence returned. Today, she swims, plays tennis and is no longer afraid to jump on a trampoline. She knows how her body works and feels empowered to explain her condition to teachers and classmates.
A special moment this year affirmed how far she has come. On the first day of school, her third-grade teacher — who also lives with a kidney condition — shared her own story. Inspired, Cora stood up and said, “I have a kidney condition too. It doesn’t stop me from enjoying my life.”
Finding New Passions
When running felt too uncertain, Cora found a different outlet: music and theater. She began playing piano and discovered enormous talent and joy.
In May 2025, just three years after starting lessons, Cora performed at Carnegie Hall after winning silver in an international piano competition.
“It was her first year ever trying it, and she got silver,” says Courtney proudly. “It still feels surreal.”
Her next dream? Learning to play the drums.
A Care Team That Feels Like Family
From the start, Courtney says CHOP’s nephrology and urology teams gave her hope. They diagnosed the problem quickly, took her concerns seriously, and treated her family with compassion.
“They were dedicated to getting to the root of what was causing this and making sure it was properly treated from every angle, because it's a genetic condition that can present in a couple different ways,” she says. “They don’t miss anything. They even had us see an endocrinologist to screen her bones because this condition can affect them. They truly look at the whole child.”
Today, Cora’s stones are smaller and fewer in number. She’s also become better at describing how she feels as she grows older. Because of her steady progress, she now only needs follow-up visits every six months instead of every three.
After everything the family has been through, appointments at CHOP have become something positive.
“She used to dread going to the doctors,” says Courtney. “Now, she’s like, ‘Oh, we get to go see Dr. Lee!’ It’s like we’re going to visit friends.”
Looking Ahead
Cora will always have kidney stones. But with medication, healthy habits and the ongoing guidance of her CHOP team, she is doing everything kids her age do, and more.
“She’s so much better than she was when we discovered this,” says Courtney.