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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Rare Disease Report:

The Pediatric Hydrocephalus Foundation (PHF) was established by Kim and Michael Illions to raise awareness of this brain condition and provide support to the families living with hydrocephalus.

Combining both of those activities, the foundation will be in Washington this August to educate legislators about hydrocephalus and the foundation will provide assistance to all families wanting to attend this annual event.

PHF is also heavily involved in the community and has multiple fundraisers throughout the year, including ones at Detroit Tiger games.

Hydrocephalus — also referred to as water on the brain — is a lifelong condition in which persons have excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. Current treatment is usually to surgically insert a shunt that drains the excess CSF to other areas of the body (usually the abdominal region). During a person’s lifetime, multiple surgeries are usually necessary to replace or fix the shunts.

Before his first birthday, Owen Rush had undergone five surgeries for an incurable brain condition.

The 4-year-old Chesnee boy will raise awareness of the condition he’s battled since birth in a national campaign.

Owen will serve as the 2014 “National Face of Hydrocephalus Awareness” for the Pediatric Hydrocephalus Foundation. Owen will represent male children, while a 4-year-old New Jersey child will represent girls.

He will be featured in ad campaigns, promotional materials and literature for National Hydrocephalus Awareness Month in September. He and his family also will travel to Washington, D.C. for “National Hydrocephalus Awareness Day on Capitol Hill” in August.

Hydrocephalus affects hundreds of thousands of Americans of all ages, according to the Hydrocephalus Association. The condition occurs when excess cerebrospinal fluid surrounds the brain and spinal cord. The excess fluid can harm brain tissue and can be fatal. Hydrocephalus occurs at birth or may develop later in life.

Owen’s parents, James and Stacie Rush, learned Owen, their second child, had the condition when Stacie was 20 weeks pregnant.

“We didn’t know anything about hydrocephalus,” James said.

The couple was faced with many unknowns and asked many questions. Why did Owen have it? How did he get it? What would happen after his birth?

Stacie said they were uncertain what potential challenges awaited their son.

Abortion was not an option.

“We just continued with the pregnancy,” Stacie said.

She cried when fears set in. She wondered if she had unknowingly passed on genes that caused Owen’s hydrocephalus. Testing revealed she had not.

Owen — their “miracle” — was born Dec. 17, 2009. After five days in a neonatal intensive care unit, Owen spent a couple of weeks at home before his first shunt was implanted.

The shunt malfunctioned on Mother’s Day 2010, then again on Father’s Day, requiring emergency surgeries. A different shunt was implanted in another area of Owen’s brain later that year. Surgery to repair his skull was performed Thanksgiving.

Fortunately, there have been no more emergency complications with Owen’s shunt. But he began having seizures around 10 months old – as many as 40 a day.

Surgeons implanted a medical device this past August in the hopes to help treat Owen’s epilepsy and improve his quality of life. He continues to have about 15 seizures each day.

“Though we’ve not seen any change in his seizures, he is more cognitively aware,” Stacie said.

Owen cannot tell you if he’s hungry, cold or needs his diaper changed. Yet, he happily runs to give you a hug and announce he loves you. There’s almost always a smile on his face, even when he’s not well.

Owen may cry when nurses draw his blood, then he wants to hug them.

“He’s so loving,” Stacie said.

And at the emergency room, the parents are told that Owen appears fine. James said they explain that’s just the way Owen is—he gets sick and turns around for a hug.

Owen’s grandfather, Charlie Drake, called him a “trooper.”

Stacie said Owen isn’t saddened about his limitations.

“He has no conception of fear,” she said.

“He’s my bionic boy,” she said with a smile as Owen walked through the living room.

Stacie took the photo of Owen that was randomly selected by the Pediatric Hydrocephalus Foundation.

Owen was in the backyard wearing his big brother, Drake’s hat, when she snapped the shot with her cellphone. Owen also has a little sister named Charlee-Kate who looks out for her big brother and warns her parents when he’s having a seizure.

Stacie, a respiratory therapist, works weekends, while James, a deputy with the Spartanburg County Sheriff’s Office, works nights.

A typical day starts with a flurry of activity – assembling book bags and deciding who will take which kids where.

Drake attends Chesnee Elementary School, while Owen is at McCarthy Teszler School.

Owen has about 10 doctors. The family is often rushing to appointments and therapy sessions. When she has spare time, Stacie prepares for the next day.

The couple has learned to take one day at a time and not take small things for granted.

James said they wish hydrocephalus received more funding that would advance treatments.

Owen could die if his shunt malfunctions.

Michael Illions, vice president of the Pediatric Hydrocephalus Foundation (PHF), has a son, Cole, who was the inspiration for the foundation. Illions said in a phone interview that Cole, 8, has had 13 surgeries related to hydrocephalus. Hydrocephalus and the surgeries to treat it have left Cole unable to speak and caused other developmental delays.

“It’s been heartbreaking and difficult,” Illions said.

Cole, he said, excels in math, electronics and reads. He’s able to communicate by typing his thoughts.

Illions said a lack of advancements in treatment has left many affected individuals unable to lead full, productive lives.

Illions said that although someone with hydrocephalus may not appear sick, they have a potentially fatal condition.

He said hydrocephalus has not received the same level of attention as other conditions.

Hydrocephalus is often treated with a shunt system that’s surgically inserted to divert the flow of excess cerebrospinal fluid to another area of the body where it’s absorbed, according to the National Institute of Neurological Disorders and Stroke.

Illions and others want to see a cure.

“While the shunt itself is a life-saving device, it has its own problems,” Illions said.

He said shunts are subject to failure and there’s a window of time to correct that failure.

“It’s like a ticking time bomb when the shunt fails,” he said.

Hydrocephalus affects an estimated one to two of every 1,000 babies born in the United States.

PHF is an all-volunteer nonprofit that provides education and increases awareness of hydrocephalus with 34 state chapters. In addition to providing support to families, the organization also advocates for those with the incurable brain condition and raises funds for research in hopes there will be a cure. According to numbers provided by PHF, it has awarded $225,000 to hospitals, neuroscience institutes and medical research centers for research and education since 2010.

Illions said the face for PHF’s awareness campaign is randomly selected.

The foundation received 160 entries from around the world, including Africa, the United Kingdom, Pakistan, India, Australia and the Philippines. About 40 states also were represented.

Illions expects a “huge turnout” at this year’s annual retreat in Washington, D.C. He said more than 100 people have registered so far.

Owen’s photograph and his story are featured on the foundation’s website at www.hydrocephaluskids.org.

Owen has inspired the Rush family more than they thought imaginable.

“He’s definitely taught us patience and so much,” Stacie said.

James said they have more gratitude for everyday things.

“Simple things for us are accomplishments for him,” James said.

What some consider a big deal, is not so big after all, James said.

Stacie’s mother, Sandra, said God has helped the family through it all.

“There are strengths that you don’t know you’ve got,” Sandra said.

“Exactly — until you’re faced with it,” Stacie added.

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Fords girl chosen as face of hydrocephalus campaign