TOLEDO, Ohio — Batten Disease is a rare terminal disease which affects two out of every 100,000 children in the U.S.
One of those children is 7-year-old Charlie Niciejewski, from Point Place.
Charlie's family wants to bring awareness to the deadly disease as Charlie's mom, Amanda Niciejewski, said only three hospitals in the U.S. are researching it.
Amanda says Charlie was diagnosed at 5-years-old after he had trouble seeing during doctor's visits.
She hung up the phone on being a 911 operator and answered the call to become a stay-at-home mom for Charlie and his older brother and younger sister.
"I didn't know what to think because I never heard of this," said Amanda. "You hear cancer, and you hear it's something you know how to fight, you know what to do, you know the next steps. With this, no one's ever heard of it."
Charlie's parents are preparing for when he'll start to have seizures, need a wheelchair and eventually become non-verbal, and bed-ridden. Though his life expectancy is his early twenties, Charlie continues to make his family smile.
"He exceeds our expectations with the things he can still do," said Amanda. "He's just such a happy kid that you would never know what's going on with him is what's going on with him."
While the disease has made Charlie legally blind, he has mastered his cane and has been learning braille which has awed his dad, Paul.
"It blows my mind at how you can read with your fingers like that, but he's able to do it," said Paul. "Every day I can see that improvement and how well he's reading and the new words he can come up with on the brailler."
Charlie is a first grader at Shoreland Elementary in Washington Local Schools District. They have partnered with The Ability Center to get him his own set of braille books and let Charlie make his own magical story.
It's through The Ability Center's DREAM Project which gives kids like Charlie the opportunity to experience books and activities like any other kid.
"In this kind of situations, hope and happiness, that's something to have, and it really helps out to hold onto that hope and that happiness," said Paul.
His family hopes raising awareness will increase funding for clinical trials and hopefully find a cure.