Family fights for awareness after son is diagnosed with an incurable disease

Published: Feb. 14, 2018 at 10:25 PM EST
Email This Link
Share on Pinterest
Share on LinkedIn

On the outside, Charles Klein is your typical second grader. He loves legos and playing with his three younger brothers. But on the inside, he's fighting for his life.

"It's terrible. It's devastating. It's something that shouldn't even be possible," Jo Klein, Charles' mom said.

In April, he was diagnosed with Juvenile Batten Disease. It's a rare genetic disorder that affects the neurological system. There are few known treatments and no cure.

For Charles, it started with vision loss.

"Then it goes to seizures and cognitive and motor problems," Jo said. "We didn't want that to be his future."

News like this would be hard for any parent to swallow. But for the Kleins, it was particularly heartbreaking.

Six years ago their oldest son, Max, died suddenly. He was three-years-old. Now these parents are forced to face another seemingly grim reality.

"How does our family move forward with this when there is no treatment, no cure, there's nothing we can do?" Mike Klein, Charles' dad asked.

There's also a chance their three other boys could be at risk.

"It's a genetic disease that has a 25% to affect each and every one of our children," Mike said.

But instead of just sitting back and trying to cope, the Kleins are trying to spread the word about this debilitating disease. They're also raising money for research and more clinical trials that could help kids like Charles.

"It's not a matter of if, it's a matter of when and if it will be in time for our child," Jo said.

In the meantime, they're enjoying time together as a family, making as many memories as possible.

"We've been grieving since April, but at the same time, knowing that each day is a precious gift and now we're ready to fight," Jo said.

The Kleins plan to have their other children tested in the next couple of months.