The Patchogue-Medford Hall of Fame is proud to recognize Brian Ilg and his family as recipients of the Sean Patrick Dixon Hall of Fame Raider Courage Award for 2019. Brian, an eighth-grader at Saxton Middle School, was born with Dystrophic Epidermolysis Bullosa (EB), a painful, disfiguring skin disorder. This devastating genetic disease causes the skin to blister and break causing wounds similar to those suffered by burn victims. The children who suffer with this disease are dubbed “butterfly children.” Only one in a million people develop EB. Brian requires a three-hour daily dressing change to treat and protect wounds that cover 60 percent of his body. Despite the pain with which Brian lives, he is rarely seen without a smile on his face. He is well loved and his sweet spirit infuses and inspires everyone he meets. In 2015, Brian’s nurses and a support group of local families—“Brian’s Bees”—pulled together to build Brian his “Honey House.” This 20- by 8-foot trailer provides Brian with a portable, sterile environment in which he can bathe and have his bandages changed in a safer, less painful environment.
In the past few years, Brian’s health and strength have declined steadily. Desperate for relief and a cure, the Ilg family started working with a team of doctors at the University of Minnesota, the only facility in the U.S. to offer bone-marrow transplants for EB patients. There were no other options. A successful transplant would improve the quality of Brian’s life and possibly enable him to live without bandages and constant pain. Brian’s sister, Annalise, a PMHS sophomore who would do anything to help her brother, turned out to be perfectly matched to become Brian’s bone-marrow donor. The Ilgs were thrilled when tests showed that the transplant of Annalise’s cells was 100% successful. But Brian still has a very long road ahead of him. He must travel to Minnesota several times a year for check-ups and treatment. His school friends have held fundraisers for him called “Butterflies for Brian.” Community members can color a butterfly and donate a dollar to help Brian’s family with the enormous expenses that come with this disease. Brian and his family show their unwavering bravery every day, and are more than worthy recipients of the 2019 Raider Courage Award, named in memory of the late Sean Patrick Dixon, who was honored for his courage by the Patchogue-Medford Hall of Fame in 2017.