Tyler Peryea: A Second Chance, Thanks to Research and Hope

At 15 years old, Tyler Peryea is focused on the same things as most teenagers—watching movies, playing video games with his friends, and dreaming of becoming an actor. His easy smile and quick humor belie an extraordinary journey that has tested his strength, his family’s resolve, and showed the power of research to save lives.

Tyler’s health challenges began when he was just 16 months old. A healthy, thriving toddler, he suddenly became gravely ill with complete organ failure. Doctors at Hasbro Children’s in Providence, Rhode Island suspected a rare immune disorder called hemophagocytic lymphohistiocytosis (HLH)—a life-threatening condition treated with chemotherapy and steroids, much like cancer. “The doctor told us he had heard of HLH only once before,” recalled his mother, Jamie. “Thank goodness he recognized it—because that saved Tyler’s life.”

After months on life support, Tyler was transferred to Cincinnati Children’s Hospital, where one of the world’s experts in HLH was on staff. There, at just shy of 2 years old, Tyler received a bone marrow transplant. Complications followed, including a rare autoimmune anemia that left him dependent on blood transfusions for about 2 years. “He had every complication imaginable,” Jamie said. “But he pulled through.”

Balancing Tyler’s medical care with caring for his newborn younger brother, Cameron, also became a significant challenge for their parents Jamie and Brad. Jamie had to quit her job to stay by Tyler’s side during the weekdays, and Brad would join them over the weekends. They are both thankful for all the support they received. “I don’t think we could have done it without family, friends, and the community,” Jamie said.

Tyler thrived for the next 7 years. He went to school, played with his brother, and enjoyed his childhood without major hospital stays. Then, in September 2024 at age 14, everything changed again. After just 9 days of high school, Tyler came down with what seemed like pneumonia caused by COVID-19. His family was actually relieved—COVID was something treatable. But within days, doctors spotted atypical cells in his blood. A bone marrow biopsy confirmed their worst fear: Tyler was diagnosed with a very rare form of acute myeloid leukemia (AML).

“It was very difficult to hear, and I don’t think we were ready for it,” said Brad. “We’d already been through this once. Hearing it again—it just broke us.”

Because of a rare genetic mutation found in Tyler’s cancer his doctors referred him to the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for a clinical trial for a menin inhibitor called revumenib. “We didn’t know if it would work, but we had no other options,” said Jamie. “When you’re out of options, research is all you have left.”

Tyler began chemotherapy combined with investigational therapeutic, which was designed specifically for patients with AML that has a mutation in the NPM1 gene. Despite the long list of potential side effects, he tolerated revumenib well. Then, in a remarkable stroke of timing, revumenib received FDA approval as his clinical trial was ending. “It meant he could stay on the medicine,” Jamie explained. “And it worked—his leukemia dropped low enough for a second transplant.”

In January 2025, Tyler underwent another stem cell transplant at Dana-Farber/Boston Children’s. Recovery was difficult—he spent 9 weeks in intensive care and required 24-hour dialysis for kidney failure. “There were moments he asked, ‘Why me? Why again?’” said Brad. “All we could tell him was to hold on—that we’d get through it together.” Slowly, Tyler’s strength returned. Within months, he was home, with his positive and happy personality coming back.

Today, Tyler continues taking revumenib to prevent a relapse. He’s regaining weight, catching up on schoolwork, and planning to return to 10th grade this fall. “He’s doing amazing,” Jamie said. “You’d never know what he’s been through.”

The Peryeas remain steadfast advocates for research funding, knowing firsthand that each new discovery can mean the difference between life and loss. “Clinical trials gave Tyler his future,” Jamie said. “There’s not enough funding for pediatric cancer, and that has to change. Every child deserves a chance.”

Brad agreed. “Funding cancer research is so important. Without clinical trials and new medicine, so many cancers wouldn’t be cured. Research gives patients a chance to live longer.”