In April of 2023, our 4-year-old son, Landon, became ill with what physicians believed to be a viral cold. When the cold seemed to have passed, Landon remained lethargic and pale in color, while developing a dry cough. Landon’s pediatrician ordered lab work, which showed an extremely low hemoglobin level, and prompted a blood transfusion. Landon returned to normal, but a few weeks later, the symptoms returned in addition to him experiencing shortness of breath from simply walking up the stairs. He returned to our local children’s hospital, received a second blood transfusion, and was admitted for monitoring. After a three-day stay, the physicians believed that Landon had suffered from a viral cold and diagnosed him with anemia and an iron deficiency.
In August, Landon’s symptoms returned and he began vomiting blood. He was rushed to the hospital and began a fourteen-day stay. After much testing, rounds of antibiotics, and a bronchoscopy, a lung biopsy confirmed the presence of blood in Landon’s lungs. Landon now had a new diagnosis—a rare lung disease called Idiopathic Pulmonary Hemosiderosis, or IPH. This disease can be life-threatening and, unfortunately, is often misdiagnosed. While Landon is responding well to his daily medications and monthly infusion treatments, there is no known cure to stop the bleeding permanently.
In December, Landon’s physician, Dr. Alicia Casey at Boston Children’s, connected us with Dr. Timothy Vece and Dr. Eveline Wu at UNC Children’s, both of whom are experts in dealing with this extremely rare disease and are currently working to create a multi-center registry that will provide funding for the first-ever study of this disease. We are thrilled to bring awareness to other physicians, fund critical research around the most effective treatments, and, ultimately, find a cure.
We want to help kids like Landon being misdiagnosed and give hope to families.