'Butterfly babies' live life with skin as fragile as butterfly wings

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."

The lightest touch, even just the rubbing of clothing, can create new wounds on the skin of someone with EB.

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Ella has been living with the disease for her entire life and is in near-constant pain, but the fourth-grader still manages to be a top student in her class.

Ella's parents, Joe and Katie Murray, welcomed a Washington Post photographer into their home last month to document a few days in their daughter's life.

According to DEBRA, there are 25,000 people currently living with Epidermolysis Bullosa in the United States. That amounts to approximately 200 children born with EB per year.