Our Story began on February 25th, 2018. Bright and early at 12:15 am our sweet baby girl Lily Reagan entered this world. We knew she would bring us joy, but we didn't know she was going to change our world. On February 27th, 2018 our lives were turned upside down. We learned that our precious daughter had Zellweger Syndrome; a form of Peroxisome Biogenesis Disorder. Lily was blind, severely mentally handicapped, suffered from frequent seizures, and would pass within six months. Although we were expecting the numerous hospital visits, nothing could have prepared our family for the transition from hospital to home.
Over the course of a few weeks, we began acquiring supplies that made our life at home much easier; a white board to track of all of Lily's feedings, medications, temperature, seizures, and supplies; a shoe organizer to make easy access and tracking of medical equipment; special drying racks for syringes, etc. After amassing a large amount of helpful tools, we realized that our lives would have been far more difficult had we not received support from our friends and family. Although they are not classified as a medical necessity and therefore not covered by insurance, these gifts proved vital to maintaining our sanity. Many families have no way to obtain this specific kind of help. At Lily’s List we want to bridge that gap.
In order to ensure every family has a smooth hospital-to-home transition, we provide Love Boxes. These boxes contain items that we and our partners have found essential to the home health nursing lifestyle. Lily was a bright light in our world. Even though she is no longer with us, we want to continue to share her light with others.