Soon after his third birthday, Webb Puricelli was diagnosed with a rare lung disease, idiopathic pulmonary hemosiderosis (IPH), which affects 1 in 5 million people. IPH causes unexplained bleeding in the lungs and can lead to other health problems. Because of advancements in research, treatment options are now available to manage the condition.
In the four years since Webb received his diagnosis, he has navigated numerous blood tests, infusions and hospital stays. His doctors say that despite these challenges, he consistently greets his care team and the hospital staff at Monroe Carell Jr. Children’s Hospital at Vanderbilt with a positive attitude and cheerful smile.
On Nov. 22, 2024, Webb’s parents, Anne and Steve Puricelli, hosted “A Night of Harmony for Healing,” an evening of live music to raise funds for the Webb of Hope Fund at Monroe Carell that they established in Webb’s honor. The inaugural event was an opportunity to celebrate Webb’s story to inspire others and to raise funds to enhance the pediatric infusion experience for patients in the hospital receiving treatment. Proceeds will also help expand innovative programs and therapies, foster groundbreaking research and help train the next generation of leaders in pediatric rare lung disease.
“We wanted a way to give back to Monroe Carell Jr. Children’s Hospital at Vanderbilt — a place that has done so much for Webb and our family,” said Anne Puricelli. “The Webb of Hope Fund and the ‘Harmony for Healing’ event is a way for us to honor Webb’s unflappable optimism in the face of a tough diagnosis and a way to build and inspire the web of supporters that surround us every day.”
Family, friends and supporters rallied around the Puricelli family at “A Night of Harmony for Healing,” including members of Webb’s care team like Lisa Buckley, MD, MSHP, assistant professor of Pediatrics in Rheumatology, and Paul Moore, MD, professor of Pediatrics and Pharmacology and director of Pediatric Allergy, Immunology and Pulmonary Medicine.
“Patients like Webb are the reason that we do what we do each day,” said Moore, who holds the Janie Robinson and John Moore Lee Directorship in Pediatric Respiratory Diseases. “I cannot think of a more fitting name for this effort than Webb of Hope, as we seek to provide hope for families through support for expanded infusion space, discovery research and training the next generation of pediatric pulmonologists. I am so grateful to the Puricelli family and the community of sponsors, friends and family who supported the event for their commitment to making a difference for other children with rare lung diseases and their families.”