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news News Friday, September 27, 2019 Friday, September 27, 2019 8:58 AM - Friday, September 27, 2019 8:58 AM

Meet Macey

Overcoming brittle bone disease

Meet Macey

Osteogenesis imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” OI is a complicated and rare genetic disorder. Most of the time, OI is diagnosed after a child has experienced several broken bones that occur from little or no trauma. Depending on the severity, babies can be born with broken bones or break a bone during normal activites such as a diaper change or when they start to walk. For very mild cases, a child may not be diagnosed until they are a teenager or young adult.

It can feel like there are many obstacles standing in the way for a child diagnosed with OI, but many children, teens and young adults with this condition are able to live very productive lives while participating in a variety of activities. 

Macey, a 15-year-old female, is a patient of Shriners Hospitals for Children Medical Center — Lexington, and was diagnosed with OI at the age of 3. “We were scared to death when we first learned of Macey’s condition,” said Becky, Macey’s mom.

There is currently no cure for OI, but there are several ways to manage the symptoms. Types of treatments include fracture care (casting, splinting, short term immobilization), physical therapy (muscle strengthening and adaptive devices), surgery (repairing broken bone, correcting bone deformities, inserting rods into the long bones to help control frequency of fractures), taking prescribed medication and living a healthy lifestyle.

“Whenever Macey has experienced a setback, she has worked hard to overcome it. Macey has always been determined to not let her condition stop her from doing things she likes to do,” Becky said.

While Macey does have some limitations to her abilities, she is still extremely active and has excelled at what she loves. When Macey and her parents learned about her condition, they transitioned Macey from cheerleading to dance, which has proven to be successful for her. Macey is a current member on her high school dance team, and was elected from her freshman class to be in the Homecoming Court this year.

Macey also loves showing cattle all over the state of Kentucky. Macey and her parents travel around the state for cattle shows and recently competed at the Kentucky State Fair. Macey was awarded third and fifth place overall in the 2019 Market Animal Champion Drive. “Macey has to use good judgment when showing cattle. The animals have to be trained before she can handle them,” said Becky. “However, Macey is excellent at creating special bonds with the cattle. It is like the animals know to be easy with her.”

Ryan Muchow, M.D., pediatric orthopaedic surgeon at Shriners Medical Center, oversees Macey’s orthopaedic treatment regarding the OI. He has performed four surgeries on Macey and has ordered a number of casts for her broken bones. “Dr. Muchow always takes time to explain the benefits and risks involved prior to any treatment that Macey may receive,” Becky said. “When needed, Dr. Muchow meets with us to have these difficult discussions on weekends and during non-traditional working hours. He is very calming during these stressful situations.”

There are six different types of OI and research on the internet can be confusing. If your child is experiencing frequent broken bones, muscle weakness, joint laxity, unstable neck, spine curves, etc., please contact the Lexington Shriners Medical Center for an evaluation with one of our specialized pediatric orthopaedic surgeons.