Helping give hope to Hayden

TWO RIVERS - Imagine celebrating your child's fourth birthday knowing she's not expected to live to be five. That's the reality for Christine Thelen.

"We weren't going to sit back and do nothing," Thelen told FOX 11. Two years ago, Thelen's daughter Hayden was diagnosed with Batten's disease. Thelen said her daughter could walk, talk and feed herself. But then, she started to regress.

"They lose their vision. Basically, their brain deteriorates," Thelen said. "They become demented, bed-ridden; they can't fend for themselves; they need to be taken care of and it's always fatal."

In a case like Hayden's, children usually don't make it past their fifth birthday, Thelen said. Hayden's parents created a foundation to raise money for Batten's disease research and hopefully find a cure.

"At first, it's very devastating to find out you're going to lose your child," Thelen said. "But this keeps us going. It makes us feel like we've done something. We've done everything we can possibly do to save her life."

The community has come through time and time again. Laurie Reif serves on the foundation board. On Sunday, she also served spaghetti.

"That could be my daughter," Reif said. "I'm very blessed that my daughter, all of my children, are healthy. I would want someone to support me if I was in the same situation."

Plenty of people came to help the cause and enjoy a meal.

"Their daughter is a beautiful little girl who has a terrible disease," said Dave Anschutz from Two Rivers. "You just want to help out as much as you can."

"The community has just been wonderful," Thelen said. "Any event we have they're here supporting us."

Thelen said Hayden is taking an experimental drug which has slowed the progress of the disease. She's hoping that trend will continue long enough so Hayden's fourth birthday isn't her last.

So far, Hayden's Batten Disease Foundation has awarded $45,000 in research grants. The Foundation is hoping to award $25,000 more in grants next month. The group is holding a fundraiser on Saturday, January 10th. Click here for more information.