Webb's Story
Just before his third birthday, Webb appeared to be suffering from a lingering winter cold. In a matter of weeks, the vibrant, energetic boy transformed into a passive, fatigued child who withdrew from playtime. Concerned by a photo from his school that captured him sitting alone on the playground, his mother took him to the pediatrician. A routine blood test revealed alarmingly low hemoglobin levels—so low that an adult would struggle to lift their head from a pillow. Webb was immediately admitted to the hospital for emergency blood transfusions and tests, and then referred to an oncologist.
Over the next three months, Webb became an enigma to his medical team. He received three additional transfusions to boost his hemoglobin, yet the levels consistently dropped without explanation. A bone marrow biopsy provided no answers, leaving Webb and his family in a cycle of false hope and dashed dreams. Finally, a chest x-ray revealed a terrifying truth: Webb was losing the blood into his lungs.
Referred to Dr. Paul Moore, Director of Pediatric Allergy, Immunology and Pulmonology Medicine at Monroe Carell Jr. Children’s Hospital at Vanderbilt, the Puricelli family faced the harsh reality of the unknown. Additional tests, including a lung biopsy and bronchoscopy, led to a one-in-five-million diagnosis: Idiopathic Pulmonary Hemosiderosis (IPH). With little existing research and grim odds—an average survival rate of just two and a half years post-diagnosis—hope seemed elusive.
So what is IPH? In short, it means that the patient experiences unexplained bleeding into the lungs, which can lead to fibrosis and potential heart or pulmonary failure. However, thanks to the groundbreaking research by doctors like Dr. Moore and Dr. Lisa Young at the Children’s Hospital of Philadelphia, the use of steroids and immunosuppressive drugs has shown early promise in managing this condition. Despite the risks associated with treatment, Webb has navigated every obstacle with resilience, bolstered by the world-class medical care from his team at Monroe Carell.
Over the past four years, Webb's life has been defined by countless blood tests, regular infusions to maintain his blood levels, and intermittent hospital stays. Yet, he consistently greets the hospital staff with cheerful smiles and a positive spirit. His parents have witnessed the joy Webb brings to those around him and strive to emulate his hope and optimism. The Webb of Hope fund reflects both Webb's indomitable spirit and the deep gratitude his family feels for the dedicated caregivers at Monroe Carell Jr. Children’s Hospital. While the future of Webb’s IPH remains uncertain, his family is profoundly grateful to everyone who has supported him in his fight against this rare condition.
I first met the Purcelli’s in the summer of 2020 at the height of the pandemic, when Webb was 3 years old and presented with an incredibly rare disease that causes bleeding in his lungs. With the help of Dr. Lisa Buckley in Rheumatology, we treated him with medications that put the disease in remission. His treatment plan required a lung biopsy, infusions to suppress his immune system and frequent bloodwork. Through all of this, I’ve watched Webb blossom from a sick toddler to an incredibly vivacious boy that we have all grown to know and love. Webb and his family have been so enthusiastically optimistic about his future and our ability to provide optimal care throughout his journey. I cannot think of a more fitting name for this effort than Webb of Hope, as we seek to provide support for discovery research, people (training the next generation of pediatric pulmonary physicians) and places (the new state-of-art clinic where patients will receive chemotherapy and infusions).
I have had the pleasure of knowing Webb and watching him grow over the last four years. Webb has a rare disease that causes inflammation and bleeding in his lungs. At the young age of 7, Webb has had multiple procedures, X-rays, blood draws and infusions. In collaboration with his pulmonologist, Dr. Paul Moore, we treat his disease with infusion medications that suppress his immune system. Webb's disease has been in remission with the help of these medications and, more importantly, the unwavering support and trust of his parents throughout his journey. Webb of Hope provides a chance to ensure Webb and other children thrive through research of rare diseases, the training of rheumatology and pulmonology doctors to treat these diseases, and the enhancement of treatment clinics. I am so incredibly proud of Webb and his family and their support of the care we provide at Monroe Carell Jr. Children's Hospital at Vanderbilt. Thank you, Webb, for allowing me to be your "Dr. Broccoli!"
