MADDIE

When Maddie Flickinger looks back on her childhood, she remembers a life filled with motion. She was a year‑round swimmer, a Girl Scout, a Pittsburgh sports loyalist, and a big sister. By all accounts, Maddie was a healthy, joyful 12‑year‑old — until the spring of 2015, when her world abruptly shifted. 

Her symptoms began subtly: unusual fatigue, shortness of breath, and a stomach that never felt quite right. At first, doctors chalked it up to allergies. But her decline quickly accelerated until she could barely stay awake. 

Her mom pushed for bloodwork. The next morning, the pediatrician urged her to take Maddie to the ER. At the hospital, Maddie’s liver enzymes were nearly 3,000, prompting an immediate transfer to a liver transplant center. There, imaging revealed the unimaginable, blood clots blocking all three hepatic veins, confirming a rare condition called Budd–Chiari syndrome. For much of the pediatric team, Maddie was the first case they had ever seen. 

The unexpected discovery of a pediatric MPN

Maddie underwent a Transjugular Intrahepatic Portosystemic Shunt (TIPS) procedure while simultaneously being listed for an urgent liver transplant. The intervention stabilized her enough to hold off on the transplant. Finally, doctors could begin asking the bigger questions: Why had a healthy child developed life‑threatening blood clots? 

“My hematologist wanted to test for the JAK2 mutation. My platelets were starting to rise to a really high level, my spleen was enlarged, and those symptoms, plus the location of the blood clots, made him think I had a myeloproliferative neoplasm (MPN).”  

Testing confirmed the JAK2 mutation, and a bone marrow biopsy finalized the diagnosis: JAK2‑positive MPN‑U. Maddie was started on baby aspirin, a blood thinner, and hydroxyurea to begin managing the disease. 

Five years of procedures and the long road to liver transplant

Over the next 5 years, Maddie’s life became a cycle of hospital visits and uncertainties, TIPS revisions, biopsies to monitor the MPN and her liver, and procedures aimed at keeping her veins open. Yet she remained determined to maintain a sense of normalcy—attending school, swimming, and staying connected with friends. 

By 2019, her liver began to deteriorate again. She was placed back on the transplant list, launching a 288‑day wait that stretched into the early months of the COVID‑19 pandemic. On June 4, 2020, at age 17, she received the call that a liver was available. Maddie underwent a life‑saving liver transplant amid global uncertainty. 

Recovery was long and difficult. Maddie spent months in the hospital managing complications while finishing high school online and applying for colleges from her hospital bed. Still, she kept going.  

“I swam with my high school swim team for my senior year, graduated high school (on the 1st anniversary of my transplant!), and started college at George Mason University in the fall.” 

A Scare, a specialist, and a turning point in MPN care

During college, Maddie experienced a severe inflammatory reaction that landed her in the ICU. Her team worried her MPN was progressing to Acute myeloid leukemia (AML), a fear that rattled her family. After receiving reassuring test results, Maddie took control of her next chapter. She reached out to MPN specialists across the country and ultimately spoke with a specialist at Johns Hopkins, who agreed to start her on a JAK2 inhibitor. 

The results were transformative. Symptoms improved almost immediately, and within months, her blood counts stabilized in the normal range — a milestone after years of fluctuation. 

Today, Maddie’s care is supported by a coordinated team of an MPN specialist, transplant surgeons, interventional radiology, and vascular experts who understand the complexity of her pediatric MPN. 

Finding community through MPN Research Foundation

In the earliest days of her diagnosis, reliable information on pediatric myeloproliferative neoplasms was scarce. Maddie remembers classmates asking, “But what is an MPN?” and not knowing how to answer. Google offered only case studies and abstracts. For a 13‑year‑old, it felt isolating. 

Her family found MPN Research Foundation, whose newsletters became a compass in a confusing landscape. Through these resources, Maddie discovered other families facing pediatric MPNs and learned about ongoing research, registries, and clinical efforts. Over time, the Foundation helped turn isolation into community surrounding research — and sparked a sense of purpose that would shape her future. 

From patient to research advocate

What started as an isolating diagnosis became Maddie’s calling. 

Inspired by the scientists she read about in MPN Research Foundation’s newsletters, Maddie began pursuing science with intensity. She took every science class available in high school and chose molecular biology and biotechnology as her major in college. She joined a pediatric cancer research lab, the same institution where she once received treatment, and even contributed to a European hematology workgroup creating guidelines for patients under 25 with MPNs. 

Her long‑term goal is clear: to become an MPN researcher and help advance treatments for future patients. 

What progress means to Maddie and her hope for the future

Today, more than a decade after her diagnosis, Maddie’s MPN is stable with no signs of progression. To her, progress means: 

• more targeted, less toxic therapies 
• improved diagnostic criteria 
• better pediatric MPN awareness 
• and research that offers real hope for long, healthy lives 

She hopes that no MPN patient — child or adult — has to endure long diagnostic delays, countless procedures, or fear of disease progression. 

Her message to newly diagnosed patients

“Find a specialist you trust,” she tells newly diagnosed patients. “Advocate for the things that are important to you and work together with your medical team to create a treatment plan with you at the center of it. Living with an MPN is hard, but you can absolutely figure out how to live your best life with an MPN while maintaining as much quality and normalcy as possible. There is hope.” 

For Maddie Flickinger, living with an MPN has meant navigating obstacles most young people never face. But it has also opened doors to purpose, connection, and a future she is determined to help shape — one where every patient, regardless of age, has access to the understanding, treatment, and hope they deserve.