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Family tells Washington Post how faith in God's plan helps them battle genetic disease

Posted June 2

Butterfly babies, reported the Washington Post, is a name for infants born with Epidermolysis Bullosa (EB), a rare skin disease that makes “skin break and peel at the slightest touch, like a butterfly’s wings.” One in 20,000 people are afflicted with EB, or “200 American babies a year,” the Washington Post said in its article.

As a butterfly baby, Ella Murray was born without skin on her legs, said the Washington Post. Now a fourth-grader, Ella’s “feet are webbed and her fingers are fused together by the scar tissue from incessant wounds. But she still has the use of her thumbs, so she can write and brush her teeth” reported the Washington Post.

According to the Washington Post, EB is caused when “cells are missing a protein that binds the skin together.”

Every night, Ella’s parents spend hours popping their daughter’s countless blisters and changing her bandages to prevent infection. It’s the best they can do for a disease which currently has no cure.

Ella’s mother, Katie Murray, told the Washington Post in a video that her daughter is always asking her questions. Sometimes, too many questions.

“‘Why did God give me EB?’” she said her 9-year-old will ask. “‘Why do I have to have EB?’”

Murray only has one answer for her daughter: “‘God needs you to make a difference in this world and EB is the way you have to do it’”

“I wish that she could make an impact in a different way,” Murray told the Washington Post in the video. “But she can’t. This is what she needs, and I think as hard as it is to deal with this disease, it’s humbling to know that your kid has been chosen to do something great.”

Danielle earned a BA in English from BYU and has been published with BYU Magazine, Deseret News, and Family Share. When she's not writing, you can most likely find her blogging, biking, or baking her favorite chocolate cake.

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