A 7-year-old boy with Baton’s disease continues to fascinate the family

TOLEDO, OH – Button’s disease is a rare incurable disease that affects two out of every 100,000 children in the United States

One of those children is 7-year-old Charlie Nicejewski of Point Place.

Charlie’s family wants to bring attention to the deadly disease, as Charlie’s mother, Amanda Nicejewski, said only three hospitals in the U.S. are investigating it.

Amanda says Charlie was diagnosed at age 5 after he had vision problems during a doctor’s visit.

She hung up because she is a 911 operator and answered the call to be a stay-at-home mom for Charlie and his older brother and younger sister.

“I didn’t know what to think because I’d never heard of it,” Amanda said. “You hear cancer and you hear it’s something you know how to deal with, you know what to do, you know the next steps. Since then, no one has ever heard of it.”

Charlie’s parents are preparing for the moment when he starts having seizures, needs a wheelchair, and eventually becomes speechless and bedridden. Despite his life expectancy of about twenty years, Charlie continues to smile at his family.

“He exceeds our expectations with what he can still do,” Amanda said. “He’s just such a happy kid, you never know what’s going on with him.”

While the disease left Charlie legally blind, he mastered his cane and learned Braille, much to the consternation of his father, Paul.

“It amazes me how you can read fingers like that, but he can do it,” Paul said. “Every day I see improvement in how well he reads and the new words he can come up with on the braille.”

Charlie is in first grade Shoreland Elementary Art Washington District Local Schools. They cooperate with Ability Center get him his own set of Braille books and let Charlie create his own magical story.

This is through the Ability Center DREAM project which gives children like Charlie the opportunity to be exposed to books and activities like any other child.

“In situations like this, hope and happiness are things to have, and it really helps to keep that hope and that happiness,” Paul said.

His family hopes that raising awareness will increase funding for clinical trials…and hopefully find a cure.