Woodbridge flag-raising for hydrocephalus awareness hailed as a first
Hydrocephalus Awareness Month flag-raising Tuesday evening outside the Woodbridge Municipal Building. Staff photo: Sergio Bichao
WOODBRIDGE, NJ -- Conservative activist Michael Illions has campaigned for gubernatorial and presidential candidates and ignited online debates on immigration and taxes.
But the New Jersey blogger's most important cause is his 5-year-old son Cole, who was born with a rare and debilitating illness whose name few people can pronounce let alone recognize.
That's why Illions and his wife Kim helped start the Woodbridge-based Pediatric Hydrocephalus Foundation in January 2009 to raise awareness and money for hydrocephalus research efforts.
"There is so much more that needs to be done," Illions said. "Fifty years ago this brain condition was pretty much a death sentence in this country and it still is in other countries."
The disorder, sometimes referred to as "water on the brain," strikes about once in every 500 births. Normally, naturally-occurring fluid cycles through the brain and throughout the body. But in people with hydrocephalus, the fluid becomes trapped, causing skull pressure to squeeze the brain.
Children who survive their first year with this condition go onto having "a fairly normal life span," according to the U.S. National Library of Medicine, but not without complications. The disorder can cause blindness and mental and physical disabilities.
Illions has found that fighting for research funding is not unlike other political issues, with the exception that he's found allies on both sides of the aisle.
Last year, state senators Joseph Kyrillos, a Monmouth Republican, and Joseph Vitale, a Democrat from Woodbridge, sponsored a resolution designating September 2008 "Hydrocephalus Awareness Month" in New Jersey.
On Tuesday, the Illions were joined by a dozen other families at the Woodbridge Municipal Building for what they said was the nation's first Hydrocephalus Awareness Month flag-raising. Mayor John E. McCormac, a Democrat, also was there.
"We're not supposed to like each other," McCormac said. "But Mike, despite his big conservative leanings, has become a good friend of mine. I'm really impressed by the job he’s done."
Other organizations dedicated to hydrocephalus already exist, but the Illions said they wanted to start their own "so we could keep the money in our community and pick our own research projects and not have overhead or staff or salaries to pay," Kim said.
The organization, for which Michael is the vice president and national director of advocacy, has chapters in seven other states. After the organization's lobbying efforts, Rep. Leonard Lance, R-7th District, and Rep. Michele Bachman, R-Minn., sponsored a resolution last year declaring September National Hydrocephalus Awareness Month.
Cole, a student at Matthew Jago Elementary School No. 28, still can't speak, one of the consequences of his condition. He also has trouble with coordination and feeding himself.
"However, he communicates in other ways, he's aware of his surroundings and he recognizes people," his father said. "He also was a late walker. We were concerned about that and now he’s walking."
"I'm expecting him to grow and get better with age, but there is no guarantee," he said. "We’re hoping he leads a normal, productive life and he's able to function without having 24/7 care. But we just don’t know."
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The Pediatric Hydrocephalus Foundation is organizing a state walk 11 a.m., Sunday, Sept. 12 at Roosevelt Park in Edison. http://www.hydrocephaluskids.org for more information.