Sunday, September 29, 2002
Steamboat Springs Once upon a time in Steamboat Springs 1986, to be exact a group of young people began to work and hang out together. As they grew older, they celebrated marriages, the births of children and other milestones.
Though many of them have moved on to other locations, they have managed to do more than just keep in touch as the years roll by. They have started a grass-roots nonprofit organization to help parents and families deal with a life-altering condition.
The group will return to Steamboat Springs Oct. 12 to host a special golf tournament. The Carly Bowles Divide Classic will raise funds for hydrocephalus awareness. Carly, the 8-year-old daughter of former Steamboat residents Valerie and Burt Bowles, has hydrocephalus.
Hydrocephalus, also called water on the brain, occurs when a body cannot absorb the cerebrospinal fluid it produces. This excess fluid collects in the ventricles of the brain. The resulting pressure can cause verbal and nonverbal learning disabilities, headaches and problems with eyesight, hearing and perception. Most cases of hydrocephalus are present at birth, but adults can contract the condition through head injury, certain medications, infection, bleeding or tumor.
Hydrocephalus generally is a lifelong condition requiring constant treatment. Shunting the cerebrospinal fluid to another part of the body allows many individuals to lead full, active lives. Although shunts were a major medical breakthrough, they can become obstructed or cause infection.
"With hydrocephalus, a person's condition can vary from week to week, day to day or even hour to hour," said Ken Godon, vice president of the Divide Classic.
Carly, who was diagnosed when she was 10 months old, has had some difficulties. "It really affected her early years," Valerie said. "But now she is doing amazingly well. I'm not saying she doesn't struggle in school, but we're in a great place right now."
Valerie is president of the Hydrocephalus Information Network at Children's Hospital in Denver. This organization reaches out to families who are living with hydrocephalus. Children's hosts a major conference with specialists who share the latest updates.
A weekend camp in Estes Park and a holiday party at Children's offer benefits that extend beyond the medical and psychological realms. "These are events where kids, parents, siblings, grandparents and cousins can get together for socializing," Valerie said.
The Divide Classic makes it possible for families to attend these events at no cost. Tournament proceeds buy conference lunches, pay for camp meals and provide holiday party gifts for all children. The group has also provided videos of the conferences for families who cannot attend.
With funds from this year's golf tournament, the group plans to finish transcribing information into Spanish and begin setting up scholarships.
Valerie explains that children with hydrocephalus can benefit from special schooling in their junior high and high school years, but it is expensive.
"We want to provide resources to help families; that's the main thing," she said. "When Carly was diagnosed, we had no information, no one to talk to, and we just felt so isolated. I want to encourage parents to try to communicate, find other people who are going through the same thing, and get as much information as you can. You're not alone. There is information and support out there when you're ready."
As for her friends who are busy planning the fifth annual event, Valerie is deeply touched by their commitment. "They've told me, 'We just love Carly and want to do anything we can.' It's just from the heart."
Christine McKelvie is public relations director for Yampa Valley Medical Center.