'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.

SEE ALSO: Strangers raise $100K for medical equipment for boy, 14, with 'worst disease you've never heard of'

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.

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Nine-year-old girl lives with skin as fragile as a butterfly wing due to Epidermolysis Bullosa
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Nine-year-old girl lives with skin as fragile as a butterfly wing due to Epidermolysis Bullosa
ALEXANDRIA, VA - MAY 13: Ella Murray, 9, and her brother, A.J., 3, both sitting on the bench, laugh as they are recognized at a book signing at the Potomac Yards Barnes & Noble bookstore May 13, 2017 in Alexandria, VA. Ali Pfautz wrote Butterflies Keep Flying about Ella and EB, the rare skin disease called Epidermolysis Bullosa that Ella has. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Katie Murray dresses the wounds on Ella's legs and body as they sing along to the Troll's movie soundtrack after her bath May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. Three times a week, she soaks off the old bandages in the bath, then her mother dresses the wounds all over her body, a process that takes between two and a half to three hours. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Ella Murray, 9, plays with her father, Joe and brother, A.J. as they hid under a blanket at home May 11, 2017 in Alexandria, VA. She has a rare skin disease - Epidermolysis Bullosa or EB. Babies born with EB or are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Female super heroes grace Ella Murray's favorite mug as she eats oatmeal for dinner May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Joe and Ella Murray chat before Ella has to go to bed May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Joe Murray tucks his daughter Ella into bed May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Ella Murray, 9, navigates the stairs as she prepares for her thrice-weekly routine of changing her bandages May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Ella Murray, 9, brushes her teeth before bedtime May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Nadine Brown checks in on Ella Murray during her fourth grade class at James K. Polk Elementary School May 11, 2017 in Alexandria, VA. She has a rare skin disease - Epidermolysis Bullosa or EB. Babies born with EB or are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: A painting of Ella Murray is in a special spot in the family's living room May 11, 2017 in Alexandria, VA. Babies born with EB or Epidermolysis Bullosa are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Ella Murray feeds her dog, Sabrina, after school May 11, 2017 in Alexandria, VA. She has a rare skin disease - Epidermolysis Bullosa or EB. Babies born with EB or are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Exhausted, hot and hurting, Ella Murray sighs as she hangs over the side of the bathtub May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. Three times a week, she soaks off the old bandages in the bath, then her mother dresses the wounds all over her body, a process that takes between two and a half to three hours. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
ALEXANDRIA, VA - MAY 11: Joe Murray comforts his daughter Ella, with her brother, A.J., 3, and dog Sabrina as they relax on in their parents' bedroom May 11, 2017 in Alexandria, VA. Ella has a rare skin disease called Epidermolysis Bullosa or EB. She often cries before having to take a bath because she knows how painful it is. Babies born with EB are called butterfly children because their skin is as fragile as butterfly wings. Even light friction from clothing can cause new wounds. (Photo by Katherine Frey/The Washington Post via Getty Images)
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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.

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