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Wisconsin parents work to find the cure to Angelman Syndrome

Posted at 9:33 PM, Jun 21, 2018
and last updated 2018-06-22 14:44:31-04

A mother and father in Southeast Wisconsin have become instrumental in the development of a possible cure for thousands of people around the world and it started with their own daughter.

As a baby, there were signs Grace was developing differently.

"She wasn't sitting, rolling, she couldn't hold her head up on her own," said mom Bethany Schleuter. "We knew something was going on."

Grace was later diagnosed with Angelman Syndrome for which there is no cure but allows for a normal lifespan.

Now, at 5-years-old, Grace cannot walk or talk. It's like she's trapped in her own body. 

She has no muscle control but her brain is fully functioning. She goes to school and is learning to communicate with an iPad.

When you're near her you can feel her joy and love for life.

"It's almost like we need her more than she needs us," said Schlueter.

"I would like her to be able to fulfill her dreams," said Grace's dad John Schlueter.

That's why, since the day Grace was first diagnosed, her parents have been educating themselves and others, raising money and meeting with doctors around the nation and world.

"I knew he would be fighting the rest of his life for Grace," said Grace's mother Bethany of her husband.

"We are actually in the process of working with the FDA to get approval for therapy that will bring about a cure," said John.

In fact, clinical trials could start next year.

"Our daughter could actually be cured in her lifetime," said Bethany.

To help fund that cure, the family is hosting a "Race for Grace" go-karting fundraiser on Sunday at Veloce Speedway in Waukesha. It starts at 11 a.m. and 100 percent of the proceeds go toward the cure for Angelman Syndrome. To purchase tickets to the fundraiser click here.