Emmet Jones wants to go outside, play ball and do things any 8-year-old boy takes for granted. But every time he does, Emmet is taking a big risk.
A second-grader at the Bozeman Summit School, Emmet has bones so thin and delicate, they seem like a bird’s.
He is one of two boys born with osteogenesis imperfecta, or brittle bone disease, attending the private, 43-student Montessori school.
In eight years, Emmet has had 21 broken bones, one major surgery, and learned to walk three times.
It has made Emmet accustomed to pain and really brave, his mother, Kimberly Hartman, 31, who works at a financial advising firm, said Monday.
“If he plays with friends, he’s exposing himself to breaking a bone,” Hartman said. “Playing with his cousins takes courage…. If he catches a ball wrong, he could break his arm. He goes out and does it anyway…. And he does it every day.”
“The safest place for me is a zero-gravity room,” Emmet said with an impish expression.
“I can read really good,” Emmet said. He likes science fiction and mystery books, Wile E Coyote and anything to do with Star Wars. He likes swimming at Eagle Mount, the nonprofit that provides recreational therapy for people with disabilities.
“I like to socialize,” Emmet said. At school, he has no shortage of friends, and kids clamor for the honor of pushing him in his wheelchair over a bump.
The school has held several fundraisers for the Osteogenesis Imperfecta Foundation this year. On Wednesday, teams of students and adults will walk around Montana State University’s track for two hours to raise pledged donations. Emmet said his teachers, Barbie Bentley and Dani Stern, came up with the idea. He named his team Lightning and wants to decorate his wheelchair with lightning bolts.
Emmet’s illness was discovered when he was 4 months old and in the hospital with a bad fever. An X-ray revealed he had broken 10 bones just being born – the clavicle in two places, six ribs and both forearms. Dr. James Feist diagnosed osteogenesis imperfecta, Hartman said. That started them on a journey with genetic and bone specialists from Montana to Nebraska.
They developed an amazing network of friends and supporters, starting with “guardian angel” LuAnn Rosengren, who connected them to people like pilot Bill Vance, Hartman said.
Last year, Emmet broke his upper leg bone. He was walking, holding his mother’s hand and tripped on a dock. The small fall had big consequences. Emmet was flown to Omaha, and had to have surgery to put a telescoping rod in his femur.
Every four months, Emmet has drug treatment by needle at Bozeman Deaconess Hospital. “He’s tough. He doesn’t cry and scream,” his mom said.
Some days are good and some are “brutal,” Hartman said. When things get tough, mother and son play a game they call Bittersweet.
“We think about the bitter and focus on the sweet,” she said. “It’s a skill you have to practice.
“This walk and the school community coming together — you wouldn’t get to experience that if you didn’t have this,” Hartman said. “You wouldn’t get to experience the best of humanity.”
Emmet said when he grows up, he wants to be a chemist. “It takes a lot of brain power, and I’m smart.” He said usually he hates having OI, but sometimes “I secretly like it a little. I usually get a lot of attention. A lot of girls like me.”
Currently he’s lobbying his mom for an iPhone4S. “I have a lot on my plate. I need a schedule,” he reasoned.
“Emmet is a bright, witty, vivacious, young man,” said Robyn Miller, associate head of the 43-student school. “He’s a beautiful contributor to our school. He’s a great friend, a hardworking student, and we’re truly blessed to have him as part of our community.”
A few weeks ago, another boy with osteogenesis imperfecta joined the school. Angela Niedermeyer’s family was moving to Bozeman and saw a news story about Emmet. She said she wanted a small school with a sense of community, and the Bozeman Summit School already had experience with OI.
“He is 9 years old and loves life,” Niedermeyer wrote. “He’s had several surgeries and hospital stays and he always looks at the bright side of things. He’s super sweet…. The school has made (him) feel successful and he loves it.”
Gail Schontzler can be reached at email@example.com or 582-2633.