Young Girl Battles Rare form of Leukodystrophy, Alexander Disease

September 30, 2013

As an infant, Chad and Lisa Borodychuk’s daughter Olivia was a happy, healthy baby girl. but as she approached her first birthday, they started to realize something was wrong.

“She wasn’t really talking. She wasn’t really crawling. She was rolling over, but things seemed just a little bit slower than the norm,” said Lisa, Olivia’s mom.

After months of testing, doctors discovered that Olivia had an extremely rare, random genetic mutation. Olivia was diagnosed with a form of Leukodystrophy called Alexander Disease, a neurological condition so rare that there are only around 200 published cases.

“It was really shocking, and then when he mentioned the prognosis, I’ll never forget that day. When he mentioned that children who have the infantile onset live to be five to 10 years old, it pretty much took me to my knees,” said Chad, Olivia’s dad.

And since then, the degenerative disease, which affects the myelin sheath around the nerve fibers in the brain, has progressed rapidly.

“She can no longer smile. She can’t hold her head up. She is wheelchair bound now,” said Lisa.

And she spends a lot of time visiting with doctors. We first met olivia at our Sparrow Children’s Miracle Network telethon, when she was admitted to the pediatric ICU. But with every trip out of the house, the Borodychuks say they are given a teaching opportunity. They talk with people they meet, especially children, about Olivia’s condition, and try to raise awareness about rare diseases.

“We just say that god made her brain a little bit different, but she still is the same as you, and she still has a heart and she loves people and she loves kids,” said Lisa.

And the Dewitt community loves her. As the Borodychuks hope for a cure, they invite their friends and neighbors join Team Olivia and fight for one, too.

Read more here.

Stay Connected

Sign up for updates straight to your inbox.