Three times a week, nine-year-old Ella Murray sits in the bath, soaking off all the bandages that cover her small body. Once the dressings are off, Ella’s mother immediately replaces them with fresh ones, concealing the many wounds that cover her daughter’s skin.
Ella was born with a rare skin disease called Epidermolysis Bullosa, or EB, which has caused her to have extremely delicate and sensitive skin which is prone to breaking. Kids with EB are often called ‘butterfly children’ or ‘butterfly babies’ because the condition makes their skin as fragile as a butterfly’s wing.
Brett Kopelan, the director of the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA), has called EB “the worst disease you’ve never heard of.”