• Children's Center

    In the Loop: Brittle bone disease can’t dim this little girl’s unbreakable spirit

In the Loop patient Ellie ButtsEllie Butts was born with a disease that causes her bones to easily break. So easily that at just 2 years old, she's had more than 100 broken bones. Yet despite the pain, she "radiates joy and love."


Terrye and Brian Butts were a month away from welcoming their second child when Terrye's doctor noticed that her stomach was measuring smaller than it should be. The next week, an ultrasound would reveal the reason. "The doctor came in, handed my wife and I a box of Kleenex and a piece of paper and said, 'Not only is your baby very, very small, she's also very broken,'" Brian tells us. The baby, a daughter they would name Ellie, had osteogenesis imperfecta, also known as brittle bone disease. The paper had some basic information on the disorder; an internet search told them much more. "We couldn't sleep," Terrye says. "We couldn't eat. We were sick to our stomachs."

Doctors near the couple's home in Austin, Minnesota, arranged for Terrye to deliver at Mayo Clinic's Rochester campus a few days later, where a team of nearly two dozen people assembled to care for mother and daughter. "We didn't know if Ellie would survive delivery," Terrye says. "But she came out screaming and crying."

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This story originally appeared on the In the Loop blog.