At around three years old, Anthony was diagnosed with Bronchiolitis Obliterans at Cohen’s Children’s Hospital of Long Island Jewish Medical Center in NY. According to the Genetics and Rare Diseases Information Center (GARD), Bronchiolitis Obliterans is “an inflammatory condition that affects the lung’s tiniest airways, the bronchioles.” The condition has caused extensive scarring in both his lungs, ultimately requiring him to be placed on the national waiting list for a bilateral lung transplant. There are currently no pediatric lung transplant programs in New York.
Anthony is now five years old, and has lived since diagnosis at St. Mary’s Children’s Hospital in Bayside, NY, requiring around-the-clock care. He is currently on weekly steroids, 100% O2 dependent, wheelchair bound, and uses a BiPAP (Bilevel Positive Airway Pressure) machine to sleep. Once per month, Anthony and his mom travel to the Children’s Hospital of Philadelphia (CHOP) to receive intensive infusion medication which helps suppress his immune system while he waits for a life-saving lung transplant.
Anthony cherishes and makes the best of each day as he continues to wait for his lung transplant. He loves to sing, get creative with his wheelchair dance moves, his grandmother’s authentic Mexican food, and superheroes! He has shown his friends, family, and surrounding community that he is a strong and brave kid. Faith and a strong family bond have given his family continued strength and courage.