For a number of families across Nebraska, Gov. Dave Heineman’s proclamation that May 2009 be Dandy-Walker and Hydrocephalus Awareness Month means a way to connect with others and form a community to fight for their children’s rights to quality of life.
On Wednesday morning, Heineman had the proclamation snatched from his hands by the inquisitive and smiling Tesla Martin, a Beatrice child whose second birthday is today (Thursday). Tesla waved it around before Heineman whispered to her that they could share it and then officially handed the proclamation to her grandmother, Terri Eldridge.
“We hope by raising awareness we’ve sparked and renewed interest. We hope to expedite research for a cause and cure of these conditions,” Eldridge said of the proclamation. “We hope that it will make families with these conditions who are isolated realize that there are other people out there with (Dandy-Walker and hydrocephalus).”
Eldridge said there are currently 10 states with such proclamations, including Maryland, Indiana and Illinois.
Another family affected by Dandy-Walker was present at the proclamation ceremony, Terry and Mary Little of Plattsmouth. Their 22-year-old son was diagnosed at age 21, though he is still undergoing tests.
“We knew he was slow,” Terry Little said. “His mannerisms were different.”
The Littles found out about the proclamation by running an Internet search for Dandy-Walker in Nebraska. That’s also how they connected with Eldridge, her daughter April and precocious Tesla. Right now, the Littles are trying to learn all they can about Dandy-Walker.
Debbi Fields, the executive director of th National Hydrocephalus Foundation, flew from California to attend the ceremony.
“It’s going to bring a lot of awareness needed to (Dandy-Walker and hydrocephalus), and hopefully people will be able to find the help and support they need,” Fields said.
And while Dandy-Walker syndrome is rare, hydrocephalus is a common condition that few people are aware of.
State Sen. Norman Wallman’s son, David, was born with hydrocephalus.
David Wallman had shunts put in his brain to alleviate pressure at 15 days old, four years old and 10 years old.
Pat Wallman, David’s mother, remembers when some people at her church made insensitive comments about David’s partially shaved head after a shunt was replaced.
“Yes, there was some stigma. David, because of (hydrocephalus) had one eyelid lower than the other; we had that repaired,” Pat said. “Teachers were hesitant to let him play on the playground because he didn’t wear a hard hat.”
Norm Wallman said David had frustrating moments growing up because he couldn’t play rough sports like other boys his age and had difficulties others didn’t.
“David handled it very well emotionally and physically,” Norm Wallman said. “We told him we all have our cross to bear.”
David struggled in school, but he graduated and became a rough carpenter. David’s parents believed in helping him succeed, Pat said. When David graduated, his entire class cheered for him, while he jumped up and down with excitement.
“His shop teacher said (David would) never succeed because he couldn’t do fractions,” Pat said. “But he went on. He was an overachiever.
“Let (Tesla) do what she can do,” Pat said. “There are enough caring people in the world to help us through adversity.”
Mandy Cramer, a doctor of physical therapy at Beatrice Community Hospital, works with Tesla each week. Cramer said Tesla has made great improvements since she began physical therapy. At 13 months old, she began sitting. In the past 11 months, she has progressed to crawling, pulling herself up to stand and taking some tentative steps.
“She’s a happy little girl,” Cramer said. “She loves to play, and that’s what our therapy is centered on. I think our biggest goal right now is to see her walking, to go to the playground, walk through the grass, climb up a slide. I think she’ll be able to achieve that.”
These families look to each other and many others for understanding. They share a bond, and a faith that despite the difficulties their children face, a network of support surrounds them.
In spite of the Dandy-Walker diagnosis, the Littles’ son earned a GED and attended Southeast Community College at Beatrice for two years before transferring to Bellevue. Their son has a driver’s license and a part-time job while he takes classes. Terry said his social skills improved some while attending college. Before then, he had few friends outside the family and was home-schooled after the fifth grade. But the Littles’ son has aspirations like any young man his age.
“He has dreams of buying a new car, buying a house, settling down, finding someone,” Terry Little said. “He likes sports, he likes music, he enjoys TV. He’s job hunting and let’s see what happens. We’re hoping for a bright future.”
