11-year-old Kearney student spreads awareness of ‘Brittle Bone Disease’

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KEARNEY, Mo. -- She's only one broken bone shy of 100.

An elementary school student from Kearney has a rare disorder that causes her bones to be brittle, and she's working to spread the word about her condition.

It must seem as if 11-year old Mihaley Schlegel has spent a lifetime in doctors offices after breaking 99 bones in her body.

It's all due to a condition called Osteogenesis Imperfecta. Her family says that's what's caused her bones to be brittle and her body height to be limited.

Schlegel is a student at Dogwood Elementary School, and her family has a stack of x-rays, showing the metal rods in her legs, and scores of broken bones.

"If someone fell, they might just get up, they might have bruises or scratches," Schlegel said. "I usually break when I fall."

"Sometimes just walking wrong, turning, stepping can break a bone," Michelle Schlegel, Mihaley's mother, said. "Rolling over in her sleep can break a bone. You never know what's going to cause a fracture."

Osteogenesis Imperfecta, or OI as some call it, results in a lack of collagen in the bones. That's the protein that gives bones their durability, and there's no cure for the condition.

Michelle says Schlegel, who is one of their family's 10 children, wasn't expected to make it through birth.

"We go through hospitalizations constantly," Michelle Schlegel said. "We may be planning an event, and all of a sudden, it's changed because Mihaley has broken a bone."

Next week is National OI Awareness Week. Schlegel designed a t-shirt meant to raise awareness of kids who suffer from her condition.

"You don't want to spend your life crying and moping around because you can't do other stuff like other children," Schlegel said. "You have to live your life to the fullest."

Kearney Mayor Bill Dane tells FOX 4 News that Schlegel will be the guest of honor at Monday's Board of Alderman meeting, where she'll receive a special citation from the city in observance of National Wishbone Day, which is designed to shed light on the disease.

The city of Kearney is also planning a Paint the Park Festival for Saturday, May 10. Ceremonies are planned to drape all of Lions Park in yellow, which is the color designated for Osteogenesis Imperfecta.

More information on how to get the OI t-shirt here.

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