LAUSR

* Abbreviations: EB — : epidermolysis bullosa RDEB — : recessive dystrophic epidermolysis bullosa In my career as a pediatrician, I have gone to many funerals. I have cared for 28 children with recessive dystrophic epidermolysis bullosa (RDEB) in both primary care and hospital inpatient settings and attended 12 of their funerals. These funerals celebrated lives that had meaning, that brought great joy as well as heartache to their friends and families, and that made the world a better, more tolerant and understanding place. At 2 funerals, almost everyone wore pink, the girls’ favorite color. At another, almost everyone wore T-shirts with Batman, the boy’s favorite superhero. At another, the church was a sea of Bronco orange because of the boy’s football passion. At others, we learned about a boy’s well-delivered comedy routines, a girl’s love of horseback riding (her horse was outside greeting people as they came to the service), and a girl’s love of making lasagna. Attending these funerals provided us with a valuable perspective on the lives of chronically ill children with a terminal illness. They also helped us cope with our frustration. Why could we not have done more to alleviate our patients’ suffering and delay the deaths of these children? We gained a deeper understanding that these children, despite their terrible disease and suffering, brought enormous joy to their parents and friends. Our entire team had the satisfaction that our care and support helped to maximize … Address correspondence to Stephen Berman, MD, FAAP, 13199 E. Montview Blvd, Suite 310, A090, Aurora, CO 80045. E-mail: stephen.berman{at}childrenscolorado.org