Hitting Life’s Curveballs: A Rare Kidney Diagnosis

After 11 years on the pitcher’s mound, high school freshman Tyler couldn’t have anticipated the curveball—a rare kidney diagnosis—that life was about to throw his way. It all started with flu-like symptoms, lethargy and stomach issues. Multiple COVID tests all came back with the same result: negative.

One morning, Tyler woke up feeling extremely lethargic. Clearly, this was more than just the stress of a new school year. His mother, Jennifer, decided to take him to the Emergency Department at Danbury Hospital, part of Nuvance Health, a Connecticut Children’s Pediatric Care Alliance partner. As emergency medicine physician Robert Bazuro, DO, examined him, Tyler mentioned a rash that had recently appeared on his ankle. Dr. Bazuro quickly called in a colleague, Beth Natt, MD.

A diagnosis of Henoch-Schonlein purpura

Dr. Natt, director of pediatric hospitalist medicine at Danbury Hospital and Connecticut Children’s regional clinical director for hospital partnerships, diagnosed Tyler with Henoch-Schonlein purpura—an extremely rare disorder affecting fewer than 200,000 individuals per year. The disorder causes vascular inflammation in the skin, joints, intestines and kidneys. One of its identifiers is a purplish rash found on the lower legs or buttocks.

Tyler’s mom was overwhelmed when she heard the diagnosis.

“I was trying to quickly google the disorder, but I had never heard of it, so I didn’t even know how to spell it.”

In short order, Tyler found himself hooked up to an IV and admitted to the hospital. Although he was released after a few days, he wasn’t out of the woods just yet. Because Henoch-Schonlein purpura often affects the kidneys, baseline kidney testing was scheduled and weekly monitoring would be required.

Tyler during chemo and prior to his kidney biopsy

Six months of chemotherapy

Tyler’s medical care was transferred to Robyn Matloff, MD, MPH, a pediatric nephrologist at Connecticut Children’s. To counter severe inflammation in his kidneys, Tyler began a chemotherapy medication called Cytoxan. The side effects of the chemotherapy, coupled with steroids, were rough—weight gain, hair loss and anemia. Some days, he could barely function.

Through it all, he refused to give up the one thing that fueled his passion—baseball. Six months of chemo and another hospital stay weren’t enough to keep him from baseball practice. Nor did it keep him from achieving academically. Tyler maintained all A’s and B’s in school and was selected as a National Honor Society member. He even found the strength and time to mentor young children with a local nonprofit, teaching them about empathy, sympathy and other social and emotional behavior.

Tyler has a strong interest in studying pre-med.

A flare-up and a trial medication

In his sophomore year, another flare-up led Dr. Matloff and her team to suggest a new therapy, one categorized as a trial medication for Tyler’s condition. They helped Tyler’s parents navigate the complexities of the insurance world to gain access to the medication. Fortunately, Tyler tolerated the new therapy well.

Now a high school senior, Tyler is off steroids and his kidney function has returned to normal. He has begun investigating colleges and has a strong interest in studying pre-med. With all he’s been through, mom Jennifer said, “He could probably teach the biology lessons on kidneys and how the body works.” And who knows? One day, Tyler may don a white coat himself and help another family understand a rare disease with a hard-to-spell name.