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."
Ellie also came out with several broken bones in her legs, arms and chest. They were the first of many fractures — more than 100 to date — that she has endured in her first two years of life. "She laid naked for the first six months because her bones would break when we put clothes on her," Terrye says. "She can't walk or crawl because any time she bends forward she snaps her femurs right in half." Even a case of the hiccups can be dangerous, once leading to five broken ribs. Brian tells us the breaks sound "like a really large stick snapping."
While there's no cure for osteogenesis imperfecta, there are treatments. Every three months, Ellie visits Mayo Clinic for an infusion of bisphosphonates, designed to strengthen her bones. Next year, she'll have metal rods implanted in some of the bones in her legs in an attempt to straighten and strengthen them and give her a chance at walking.
For now, Ellie uses a wheelchair to move. She follows her mother around the house asking every two-year-old's favorite question — "Why?" — or waits at the door for her dad or doting big sister, Kaylee, to come home. "I get to see her sitting in front of the door in her wheelchair, waving at me, and just smiling, making me so happy," Kaylee tells KAAL-TV. That's a gift Ellie shares freely, in spite of the pain she lives with. "The wheelchair doesn't define Ellie," Brian says. "She radiates joy and love."
That spirit has helped her family endure their often agonizing and isolating new life. Because Ellie is so incredibly fragile, Brian and Terrye are the only people who care for her. They're never sure when another devastating fracture will come, which means plans are always tentative and often cancelled. Even visits from grandparents are potential hazards, as Ellie may get overexcited and break a bone.
In many ways, the Butts' world has gotten smaller since Ellie's arrival. There are fewer friends, less travel. But there is also more love and a bigger perspective, all courtesy of one tiny girl. "We're much less social than we used to be, but we're much happier this way," Terrye tells us. "We all have each other. This is something that's either going to make you or break you. It's amazing how strong a family can be." (We couldn't agree more.)
You can learn more about Ellie and hear from her Mayo Clinic doctors in this KAAL-TV story. Then leave a comment below before using the social media tools atop this page to share this story with others.