When you look at 4-year-old Hailie Mussinan, you see an incredibly happy child. She is a perfect example of the pediatric hydroceopalus patients we treat at ANA. In Hallie’s case, a shunt inserted by Dr. Arno Fried lets her live with a potentially life-threatening condition. Shunting, which began in the 1950′s, entails the placement of a tube (the shunt) in one of the brain’s ventricles or into the space of fluid in the spine in order for the spinal fluid to be safely absorbed.

For good reason, Hailie was selected as one of two children to serve as this year’s “National Face of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation (PHF) to help raise the level of awareness and education about hydrocephalus in the United States. Hailie, whose family lives in Woodbridge, will represent the girls, while 4-year-old Owen Rush of South Carolina will represent the boys. Hailie will be featured in advertisement campaigns and promotional materials for Hydrocephalus Awareness as we head towards the 6th Annual “National Hydrocephalus Awareness Month” in September. Those passionate about the cause have also created PHF Hydrocephalus Awareness Day on Capitol Hill, which took place in August.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about hydrocephalus. PHF, with 34 state chapters, provides support to families, friends and children affected by this incurable brain condition.

PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF 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.
Hydrocephalus is the most common congenital defect of the brain and spine with 1 in 500 infants born with this condition. Although it can occur in adults, hydrocephalus is more common in children, especially infants, and can potentially cause damage to the brain.

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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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MANCHESTER-Manchester PBA 246 is inviting community members and businesses to help support its Fifth Annual Golf Outing, scheduled for Monday, May 5 at Pine Barrens Golf Club in Jackson.

Each year, Manchester PBA 246 selects a charitable cause to support with funds raised by the Golf Outing. The primary beneficiary of the 2014 event is the Pediatric Hydrocephalus Foundation, a nonprofit organization committed to raising awareness and urging greater research of the brain condition which affects more than one million Americans.

“All of the causes Manchester PBA 246 has supported throughout the years have been well deserving and we’re proud to help the Pediatric Hydrocephalus Foundation this year,” said Manchester PBA 246 President Paul Bachovchin.

Manchester PBA 246 Golf Outings serve as the organization’s cornerstone fundraising effort and have raised nearly $20,000 each year for charitable causes since 2010.
The proceeds are split between a primary beneficiary—in years past Children’s Specialized Hospital and Parents of Autistic Children received donations—and the other causes supported by Manchester PBA 246 throughout the year.

“I’m proud of the fact that our annual golf outing is looked upon by other organizations as a well run and successful event,” Officer Bachovchin said.

Many levels of sponsorship opportunities are available and range from $25 to $3,000. Registration forms and a detailed list of sponsorship levels are available through the Manchester Township Police Facebook page, www.Facebook.com/ManchesterPolice.

For more information or to become a sponsor, contact Officer Bachovchin at 732-657-2009, Ext. 6356 or PBachovchin@Manchestertwp.com.

Pine Barrens Golf Club is located at 540 South Hope Chapel Road, Jackson, NJ 08725.

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Fords girl chosen as face of hydrocephalus campaign

WOODBRIDGE – Four-year-old Hailie Mussinan was chosen as the face of a national campaign to bring awareness to pediatric Hydrocephalus.

Mussian, a Woodbridge resident, has the incurable and potentially life threatening condition known as Hydrocephalus. The condition is a buildup of fluid inside the skull that leads to brain swelling.

She has had a total of five brain surgeries in 22 days.

Mussian’s face will be featured in a national awareness campaign against the condition, according to the release. Her family will also travel to Washington, D.C. on Aug, 22 for National Hydrocephalus Awareness Day on Capitol Hill.”

Mussian was chosen along with a four-year-old South Carolina boy named Owen Rush.

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