“Would I be alive without my brother’s bone marrow?” is a question Samantha Phelan asks herself often. Recently, she posed the question as she delivered the valedictorian speech at the University of San Francisco, where she graduated in under three years—an achievement she never dreamed of accomplishing just a few years priors as she was fighting for her life at Lurie Children’s.
Samantha was a typical high school student when she was diagnosed with an ultra-rare bone marrow disease known as paroxysmal nocturnal hemoglobinuria, or PNH. PNH is a life-threatening disease characterized by its complications with bone marrow function and destruction of red blood cells. After Dr. Robert Listernick, Director of Diagnostic and Consultation Services at Lurie Children’s, diagnosed the extremely rare disease, Samantha began an intensive treatment plan requiring-weekly infusions under the guidance of physicians Dr. Robert Liem, Director of the Comprehensive Sickle Cell Program at Lurie Children’s, and Dr. Sonali Chaudhury, attending physician in Hematology, Oncology, Neuro-Oncology and Stem Cell Transplantation at Lurie Children’s.
“Her red blood cells are prone to breaking down, which causes her to be anemic and to need frequent blood transfusions,” Dr. Liem said. “The medication she needed is called eculizumab, which protects her red blood cells from breaking down.” At the time, eculizumab was the most expensive drug in the world, costing $20,000 per dose.
Doctors told her she would eventually need a bone marrow transplant to cure the disease and live an insfusion-free life. “The condition also caused her bone marrow to fail so that her immune system cells (white blood cells) and platelets were also low,” Dr. Liem said. “That’s why the only curative treatment for her was a bone marrow transplant using her brother as a donor.”
When the time came, Sam’s family members joined the bone marrow registry in hopes of saving her life. Miraculously, her older brother John was a perfect match.
The procedure performed at Lurie Children’s cured Sam of her disease.
Sam went on to attend the University of San Francisco (USF) where she graduated with a perfect academic record in just three years. She earned a degree in communications studies and was chosen to be USF’s valedictorian speaker at her graduation ceremony. Inspired by her own experience at Lurie Children’s and the life-saving gift her brother shared with her, Sam delivered a speech that emphasized the transformational role of generosity towards friends, family and even strangers.
Would Sam be here without her brother’s bone marrow? “I’ll never know,” she says, “but what I do know is that I can be that pivotal person in someone else’s story. We all can. Watch Samantha’s entire speech.