Rare brittle bone disease

HealthBeat

SIOUX FALLS, S.D. (KELO) — Parents of toddlers may find themselves busy chasing after their children making sure they don’t get hurt as they learn to crawl and walk. 

But a local mother is paying extra attention to her 1-year-old, due to a rare genetic bone disorder.

Jessica Schulte was 5 months pregnant with her second daughter, Olivia Kjellerson, when she learned the news that her daughter would be born with Osteogenesis imperfecta type 3. 
The genetic bone disorder, sometimes called “brittle bone disease” was something Schulte had never heard of. 

“I was on bed rest and I couldn’t hardly do anything because if I bumped my stomach wrong I had a tendency of breaking her inside me,” Schulte said. 

The disorder is caused by a gene mutation, resulting in health issues such as severe bone fragility and bone malformations.

Olivia entered the world with a broken collar bone, arm, and right hip.

“Some babies the bones are so soft they need assistance, they have respiratory problems, and they might not even survive. But if they don’t have respiratory problems then after the first year of life, life expectancy is normal and intelligence is normal too,” Dr. Laura Davis-Keppen said. 

Davis-Keppen says after adolescence Olivia’s bones won’t be as brittle, but they will never be completely normal.

To strengthen her bones, Olivia receives an infusion every two months that increases bone density. 

Olivia currently has a fractured elbow that doctors say could’ve happened from her simply throwing a toy. 

“There’s always a possibility of a fracture. You have to swoop her, you can’t pick her up from beneath the arms because you can break her ribs or her collar bone,” Schulte said. 

Because of Olivia’s disorder Schulte says daycare isn’t an option. Thankfully, big sister Abby is there to help. 

Schulte is hopeful for Olivia’s future, with the potential to someday be able to walk. But for now she’s taking things slow with her daughter, and says the disorder has taught her to be a calm and patient mom.

“If it ever does happen to somebody else it’s manageable, it’s scary but, anybody can do it,” Schulte said.

If you’d like to donate to the family’s medical expenses, click here.

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.


 

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