A Ballerina in Our Midst: Evie's Story

A day after Evie was born, mom Emily, who is a nurse, knew there was something wrong.

“She was very tiny, had poor muscle tone and was constantly screaming in pain,” she said. X-rays taken during Evie’s visit to a neonatologist revealed multiple fractures and a genetic test confirmed that she had a rare condition called osteogenesis imperfecta (OI), also known as brittle bone disease. With OI, bones are soft and break easily, often without cause.

“I was devastated,” recalled Emily. “We were very careful with Evie’s activities to keep her as safe as possible.” As Emily did a lot of searching for the best treatment options, she came across an OI support group on social media who recommended Craig Ono, M.D., at Shriners Children’s Hawai`i. “It was a blessing to have such a great doctor available who did outreach visits on Kauai,” she said.

Since then, Evie has undergone four surgeries to help strengthen her femur and fix her teeth, which is a lot for an 8-year-old to deal with, yet she remains positive and cheerful. “I used to feel helpless as a mother and nurse, because I just want to protect her,” said Emily. “But it’s comforting to know everyone at Shriners Children’s is knowledgeable about her condition and treats her with love and kindness. They are part of our `ohana.”

As Evie grows older, additional surgeries will be necessary to stabilize her bones and help her enjoy her favorite activities, including ballet. “I thought Evie could never do ballet because of her condition,” said Emily. “But when she told Dr. Ono she was going to be a ballerina and dance on her tippy-toes, he agreed. Next thing you know, she’s dancing for him in the hallways.”