HAMILTON – How far would you go to help someone you love? For Katie Gaven, the answer was 26 miles.

The Hamilton resident competed in the grueling New Jersey Devilman Duathlon — which calls for contestants to perform a 6-mile run on top of a 20-mile bike ride — in Cumberland County earlier this month in order to raise money and awareness for the rare brain disease affecting her 21-year-old cousin, Adrienne D’Oria.

“The race wasn’t a fundraiser for anything in particular, so I was thinking of how I could fundraise for something, and I thought of my cousin,” Gaven said. “Her disability is one that goes under the radar a lot, so I just felt like I needed to make people more aware.”

D’Oria is afflicted with hydrocephalus, a condition in which excessive fluid gathers in the brain, placing a potentially damaging amount of pressure on brain cells. Affecting about one of every 500 births — and about 1 million Americans — the disease has no cure and, if left untreated, can be fatal. Often those suffering from it are limited in the tasks they can perform.

The condition is so relatively unknown that Gaven, an occupational therapist who works with people suffering from a range of disabilities, said even many in her field are unfamiliar with it.

“I raised a lot of the money through my school, and a lot of people participated in that and asked what this disease was,” she said. “My aunt just kept saying ‘That’s so great. That’s the whole point of doing these fundraisers — to make people more aware of this condition.’”

Gaven spoke about the number of trials her cousin had already been through in 21 years. Born with the condition, she was fitted with a device inside her head that keeps track of her condition.

If a test indicates something is wrong with that system, or once she has grown and needs the machine to be refitted, she must undergo intensive operations where part of her skull is cut open in order for doctors to fix or replace the device.

Gaven’s fundraising ventures also helped bring in $1,000 to help find a cure, she said.

“What inspired me, too, is that she’s had over 50 brain surgeries and procedures all together, and she will still go out and run a mile,” Gaven said. “And to me, that’s just unbelievable and amazing because sometimes I struggle with getting up in the morning and running, and she’s gone through all this and still does it.”

D’Oria’s perseverance and determination inspired and helped Gaven throughout the race, which will be her last after many years of participating in similar events, she said. The thoughts were especially helpful for Gaven in moments of weakness during the race, she said.

“When you’re getting tired and fatigued and want to give up, I’d think of her and it was motivation to keep going,” she said. “She’s definitely gone through a lot for someone who’s only 21. She inspires a lot of people, and I don’t think she even realizes that.”

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Danielle & Kel Roberts are the PHF State Chapter Directors of Alabama

HARTSELLE, AL (WAFF) –

Young mother of two Danielle Roberts told us, “I was 16 weeks pregnant when they told us she had hydrocephalus.”

Her husband Kel Roberts said they were shocked to learn the daughter Danielle was carrying had water on her brain.

“There was so much damage and so little brain that was left that she really wouldn’t have a chance, and we were asked to make a choice at that point whether or not to ‘carry on,” he said.

And carry on they did. Kel said there was a lot of prayer and support.

“If we back track to the very beginning, there was not a whole lot of hope for anything. We’re three years more than what they really gave us,” he said.

Reagan is now a sweet, coy three year old with a shunt. Her mom described how it works.

“This part goes in the brain and it drains the pressurized fluids. Once that fills up, it will drain out and it drains out into about her abdomen,” said Danielle.

She says the body absorbs the fluid. This is basically the same technology available in the 70’s.

There are some developmental delays with Reagan.

“The biggest delay that she’s got would be mobility,” said Danielle.

Reagan’s grandmother has a nickname for this precious bundle. She calls her ‘Amazing Grace,’ and it’s easy to see why.

He dad says she’s making great progress.

“She is not limited in any way. She gets around on her own. She is more than capable and more than willing and strong enough to do and be what ever she wants to be,” said Kel.

She recently suffered a seizure, so her parents took her to her neurologist. Current test results show remarkable improvements. “She is super intelligent. I mean it just blows us away every day. And we treat every day as a miracle”, adds Kel.

To learn more about hydrocephalus:

Active.com
Hydrocephalus kids blog
AL Pediatric Hydrocephalus Foundation
National Institute of Health

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Great post-event article about the PHF Benefit Concert this past Saturday in Detroit, Michigan starring Teen Nation Tour, which raised $3,330+ for Hydrocephalus Research!

DETROIT, MI- Employees of one of General Motors Co.’s largest Michigan production facilities are rallying together to help raise awareness of an incurable disorder that is impacting one of their fellow employees and his family.

Hawke Adams, 5-year-old son of quality engineer Jason Adams at GM Detroit-Hamtramck Assembly, has hydrocephalus – a disorder that causes excessive accumulation of fluid in the brain that creates harmful pressure that can be fatal.

“It’s real personal to me,” said Jason Adams, who also serves as co-director of the Pediatric Hydrocephalus Foundation. “So, the plant leadership, UAW and GM as a whole got behind the idea of, ‘let’s do something.’ ”

As part of a monthly “diversity initiative” program, workers and plant leadership decided to help sponsor a benefit concert with the “Teen Nation Tour” in an effort to help raise awareness of the disorder, which has already caused Hawke to have 10 brain surgeries.

Doneen McDowell, Detroit-Hamtramck plant manager, said once hearing about Hawke, the Diversity Initiative team felt the concert was a great opportunity to help.

We wanted to figure out a way we could support Jason because he does a lot for the Pediatric Hydrocephalus Foundation,” she said. “Not only because his son has it, but he’s developed a connection with other families that have it.

“We felt a connection the minute he started talking about it.”

The concert, which features a number of young singers, is scheduled for 7 p.m. Saturday at the UAW-GM Center for Human Resources, 200 Walker St. in Detroit. Doors open at 5:30 p.m., followed by a special red carpet entrance by the performers at 6 p.m. and a VIP meet-and-greet at 6:30 p.m.

Tickets are still available starting at $5 for children 6-12 years old and $10 for adults and VIP tickets to meet the performers. Children under 6 years old are free. For tickets, call 810-441-9170 or email Jason.Adams@gm.com.

Proceeds from the “Teen Nation Tour” concert will go toward the Pediatric Hydrocephalus Foundation, which Jason Adams and others also annually lobby for on Capitol Hill.

Performers include former “X Factor” contestant J Ryan, 14, of San Antonio, Texas; Tristan Blaine, 14, of Frisco, Texas; Nic Neufeld, 11, of Dodsland, Saskatchewan; Faith Marie Shirley, 15 of San Antonio, Texas; Collin Kozola, 17, of Naperville, Illinois, Katie Akin, 14, of Atlanta, GA; and Kaity Floyd, 20, of Dallas.

The number of people who develop hydrocephalus or who are currently living with it is difficult to establish since the condition occurs in children and adults, and can develop later in life. Some estimates report one to two of every 1,000 babies are born with hydrocephalus.

For more information on the Pediatric Hydrocephalus Foundation, or to donate, visit hydrocephaluskids.org.

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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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