Massillon baby has rare terminal disease that breaks down brain cells

MASSILLON, Ohio-- They say cherish every moment with your children because they grow up fast. 

"Leighton was born Thursday, March 13, 2013," said Kara Meister, of Massillon.

Kara and her husband, Ben, said Leighton was basically a normal baby.

"She slept and ate well. Then one night at about 15 months old, she started screaming and it never stopped. For three months, she would scream all the time and she wouldn't sleep," Kara said.

They saw several doctors. In April, they went to Akron General to get the results of their genetic tests.

"A doctor told us Leighton had a genetic disease. And that it was recessive, neurological and it was terminal," Ben said.

The Meisters' world came crashing down as doctors told them that Leighton had a rare disease called infantile Batten or CLN1.

"In the last eight months, she has lost virtually all of her motor skills," said Ben.

So, what is Batten disease? It's a genetic mutation that basically breaks down brain cells. It causes Leighton to have seizures and lose her eyesight.

"We've gone from she was all over the place, to she can't sit up on her own now. She can't sit up, she can't feed herself now," Kara said.

"It's just horrible. They have very limited time with their child," said Tracy Kirby, director of development with the Batten Disease Support Research Association in Columbus.

Kirby said Leighton has CL1.

"It affects the younger children and are diagnosed between between 6 months and 2 years. They typically pass away between 3 and 5 years," Kirby said.

Kirby said there are 14 different forms of Batten disease. There is no cure.

"Right now, we have clinical trials for two of the forms so there is a lot of work to be done. Nationwide Children's Hospital is the only location in the U.S. that are doing clinical trials for CLN2 and CLN6," Kirby said.

In the meantime, the Meisters' life moves forward. And at the end of each month, Leighton can do less than the one before.

"To know she's already hit the farthest step she will go, we know she doesn't have a lot of time," Kara said.

For more information on Leighton's Battle Against Batten, click here.