WEST MONROE, La. — A pain that no parent ever wants to endure. Cindy Watson lost her 7-year-old daughter Lexie to a disease that she had never even heard of.

“When she died it broke me almost,” said Cindy.

When Lexie was 3, she began having seizures. Cindy and her husband took their little girl to the doctor and after several tests Lexi was diagnosed with Batten Disease.

Batten Disease is a neurodegenerative disease of the brain that is fatal and has no cure. Children with Batten Disease generally don’t live past 7 or 8 years old.

“They lose their ability to walk and talk. They have seizures, they go blind, and they pass away,” said Cindy.

The Charlotte and Gwenyth Gray Foundation’s mission is to find a cure for this rare disease and for Cindy, it’s a cause that will stay close to her heart forever.

Cindy said, “To have this honor in her name, to be able to go on and help children because children shouldn’t — you should never have to outlive your children. It’s just a horrible disease.”

Lexie would have celebrated her 28th birthday in May.