'Dandy Kids' Bringing More Families Together

DENVER -- Ten-year-old Hunter is getting the opportunity to discuss living with Dandy Walker Syndrome, a rare brain malformation, even more than usual. "I feel good that people ask me questions and I like to answer them," Hunter said.

Hunter is the star of “Dandy Kids,” a documentary that debuted in January. It’s about Dandy Walker Syndrome, a condition he was born with that causes him to be deaf in one ear and to have autistic-like characteristics. He says that people are starting to recognize him from his role in the documentary.

When Hunter was born, his mom was told he wouldn’t make it. It’s a story heard time and time again from families all over the world. But, it could not be farther from the truth.

Hunter is very active. He loves to play soccer and is about to graduate from fourth grade.

Up to 40,000 Americans are affected by Dandy Walker Syndrome. More families are contacting each other since hearing about “Dandy Kids.”

“I am married, I have two children, and I live a wonderful life,” said 47 year old Tamy Davis.

Davis contacted Hunter’s aunt and the producer of “Dandy Kids,” Darla Rae, after learning about the documentary. She wanted to share her story of hope with families, too.

"When you are a parent of a child born with this it is hard to see into the future. I feel like I’m an image of the future for those children," said Davis.

Davis recently joined Darla Rae on a trip to Washington, D.C., where “Dandy Kids” was screened for members of Congress. Their hope is to pass a bill to add funding dollars to Dandy Walker research.

"We have over 90 signatures and we need 100 for it to go for a floor vote," said Rae.

If it passes the floor vote, House Congressional Resolution 163 would direct money from the National Institutes of Health toward Dandy Walker research.

Rep. Tom Tancredo, R-Colo., is the first local representative to co-sign the Dandy Walker Resolution.

But, that's only one battle. On a local level, our slower economy has cut donations. Money is still needed to distribute DVDs of "Dandy Kids."

"We're at the point now where these families are contacting us saying how do we get the DVD? Families need to be able to see this and know its not a death sentence. It's a roadblock as an independent filmmaker we just can't overcome it ourselves," said Rae.

The sale of DVDs will help support a conference in Denver, where families and medical professionals can share ideas.

For more information on “Dandy Kids” and how to help visit:

Dandy Kids Documentary

Dandy Walker Alliance