In April 2023, 4-year-old Landon developed what seemed like a typical cold, but his symptoms quickly escalated. Despite treatments, his condition worsened, and by August, after vomiting blood and struggling to breathe, Landon was admitted to the ICU. After extensive testing, Landon was diagnosed with Idiopathic Pulmonary Hemosiderosis (IPH), a rare and life-threatening lung disease.
Thanks to the dedicated care of Dr. Alicia Casey at Boston Children’s Hospital, Landon’s diagnosis was confirmed, and he began a new treatment regimen. Today, Landon is thriving. He’s in first grade, playing soccer, and receiving monthly treatments for three days in Boston, which have stabilized his condition. His resilience and progress have been nothing short of inspiring.
While Landon is doing well, his journey is far from over. IPH is a complex and often misdiagnosed disease that can be life-threatening if not treated appropriately. With no clear treatment path and many children suffering, we are working to raise awareness and build a first-ever patient registry that will collect critical data to improve diagnosis, speed up treatment, and ultimately help find a cure.
This IPH Patient Registry will track patient data, treatment outcomes, and disease progression to help researchers identify the most effective treatments and the potential for personalized care. By funding this registry, we can accelerate the development of better therapies and reduce the side effects of treatments like high-dose steroids.
The total cost to fund this initial registry and research is $650,000, which will help establish a comprehensive database that can transform how doctors treat IPH. We are partnering with Dr. Timothy Vece and Dr. Eveline Wu at UNC Children’s, both experts in IPH, to lead the charge on this critical project. Together, we can create a community that offers hope, improves patient outcomes, and, ultimately, saves lives.
Your support is crucial. By contributing to this effort, you’ll be helping children like Landon live healthier, fuller lives. With your generosity, we can change the future for all those affected by IPH.
Thank you for your support.