WOODBRIDGE – Kim and Michael Illions remember feeling helpless when their son, Cole, was born with hydrocephalus, an incurable brain condition, in 2005. Although the couple had learned during her pregnancy that he would have the condition, they had few places to turn to for support.

According to Illions, hydrocephalus occurs in approximately one of every 500 births and in more than one million Americans today. (including former Congresswoman Gabrielle Giffords.) Hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.

Placing a shunt in the brain to treat Hydrocephalus was a procedure which carries a high infection rate and several shunts will need to be replaced due to infection or rejection by the brain.

“It was very frightening,” Illions said. “At one day old, Cole had his first brain surgery and had a shunt placed in his brain. We came home with Cole from the hospital, and after a week, he had his first shunt infection. He had 13 brain surgeries because of the malfunctioning of the shunt, but none were successful until 2009.”

Cole, who spent most of the first year of his life in the hospital, now attends special-needs classes at a school in Woodbridge township and is reading and excelling in mathematics. He communicates through a special talking device.

The Illions’ journey with their son led them to not only maintain a fierce determination to see Cole through his condition, but also propelled them to establish the Pediatric Hydrocephalus Foundation (PHF) in Woodbridge.

While the Illions volunteered for a couple of years with the Hydrocephalus Association, they decided in 2008 that they wanted to make their own mark in raising awareness. They teamed up with three other families and were approved in 2009.

PHF maintains 34 state chapters and assists the medical community by raising funds to search for treatment options and ultimately a cure.

The organization advocates on behalf of members while working with policy makers at state and federal levels to push for more research and support in the fight against hydrocephalus.

Since 2010, PHF awarded $225,000 in grants and donations to hospitals, neuroscience institutes and medical research centers for research and education. All monies raised go directly to funding research.

“Prior to PHF, there was very little awareness about hydrocephalus,” Illions said, adding that no legislation was in place to support funding research for a cure, no special color for ribbons of support that are often used to represent other conditions and no dedicated month of awareness.

Currently, PHF has events scheduled all over the country to raise awareness. From support groups to golf outings, restaurant charity fundraisers to baseball game fundraisers. The color of light blue represents hydrocephalus and N.J. state Sen. Joseph Vitale recently attended a PHF support group meeting as chairman of the Senate Health Committee.

A flag-raising ceremony is held in Woodbridge township to mark September as Hydrocephalus Awareness Month.

HAILIE’S STORY

At last year’s flag-raising ceremony, the Illions became acquainted with the Mussinan family, who was reaching out for the same support that they had once needed with Cole.

Melody Mussinan’s daughter, Hailie, who is now four, may have scars and stitch marks on her head from surgery due to hydrocephalus, but she is a cheerful girl at heart who adores dancing.

Recently, she was named one of two children who will serve as PHF’s National Face of Hydrocephalus Awareness. She will represent the girls, while Owen Rush, 4, of South Carolina, will represent the boys.

Hailie and Owen were randomly selected in the national contest, which was held in January, and they will travel to Washington, D.C. in August for National Hydrocephalus Awareness Day on Capitol Hill. There, families like the Illions and Mussinans will meet with members of Congress and their staff to raise awareness and underline the importance of funding for much-needed research.

Melody Mussinan, who is grateful that Hailie and her family will have the opportunity to be heard and represented on Capitol Hill, lives every day with the fear that her daughter’s shunt will malfunction or an infection will set in.

Yet, her daughter’s determination to pursue her love of dance at the Jill Justin Dance Alliance dance school in Edison is one silver lining that keeps her confident that her daughter is a strong and spunky little girl.

Mussinan is hopeful that there may be hope for children like Hailie and Cole.

“Maybe one day there could be a cure and our children can live normal and productive lives,” she said.

For more information about PHF, 66 Caroline Street in Woodbridge, call 732-634-1283 or visit www.hydrocephaluskids.org.

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