"Dandy Kids" Embrace Life Despite Challenges
By Liz Townsend

Editor's note. We'll be interviewing more people involved in "Dandy Kids" for a story that will appear in the March issue of National Right to Life News. Please send any comments to Daveandrusko@hotmail.com.

"Take it from Hunter, these kids just want a chance at life," reported Denver's ABC 7 News in a feature on "Dandy Kids," children with the rare brain disorder known as Dandy-Walker Syndrome (DWS). Now 10 years old, Hunter is a lively fourth grader despite the effects of the syndrome, which include deafness in one ear, symptoms similar to autism, and difficulty gaining weight, according to ABC 7 News.

According to the National Institutes of Health, DWS is "a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it." It is often accompanied by hydrocephalus, which requires a shunt to drain excess fluid that builds up in the brain.

The symptoms of DWS differ from person to person, and vary greatly in severity. "As the symptoms come up we would treat them, but there isn't anything to change the malformation itself," Julie Parsons, a pediatric neurologist at The Children's Hospital in Denver, told ABC 7 News.

Many children who are diagnosed with DWS in utero are aborted, but other parents resolve to face their baby's challenges with determination and hope. "It's every mother's worst nightmare to hear a doc say, 'Your baby has problems and may not make it, and may not be a viable human,'" Hunter's mother, Krista Fisher, told ABC 7 News. "Immediately the reaction was, 'You can terminate the pregnancy.' And I was 7 1/2 months pregnant. I knew it wasn't an option for me."

Eric and Andrea Cole, parents of two-year-old "Dandy Kid" Ryan, also made the decision for life. "The choice that we were going to make was to have this little boy and do the best job that we could to raise him," Eric Cole told WUSA9. Hungry for information and fellowship, the Kensington, Maryland, parents formed the nonprofit Dandy-Walker Alliance in January 2007.

The alliance's web site (www.dandy-walker.org) features personal stories and educational information, and the Coles are pursuing funding for research into DWS.

"I say we're accidental advocates," Cole told the Montgomery County Gazette. "You hear about something like this and think, that's really sad. You don't really think about it until it's your kid."

Ryan Cole, along with Hunter, are two of the children featured in Dandy Kids, a new documentary produced by Hunter's aunt, Darla Rae, that will be released later this year. The documentary will provide an opportunity for the public to learn more about the syndrome and see the beautiful and courageous children facing their challenges head on.

"Future families who get this diagnosis will find this and this can be a tool to help them understand they don't have to go this road alone," Cole told ABC 7 News. "It far exceeded my expectations. It's so encouraging to unite through this forum."