Hydrocephalus Awareness Month: Audubon Youth Advocating For Her Condition

COLONIAL HEIGHTS – Calls of “Faster! Faster!” from 11-year-old Casey Wray quickly turned into “Whoa!” as a group of four pushing his running stroller kicked into full speed Saturday.

The 5k race that started at White Bank Park was held for his birthday, which was two days earlier. It also was organized by his mother, Belinda Wray, to help raise money and awareness for the Pediatric Hydrocephalus Foundation.

Casey, who was born with hydrocephalus, loves to participate in runs but he doesn’t have the mobility to run the distance himself, Belinda Wray said. But he has plenty of support.

“Team Casey” — made up of Laura-Beth Louthan, Ali Smith, Dana Barefoot and Matt Ruland — pushed him through the course and he finished third overall in the race.

“He loves racing and this is a great way to do that,” said Belinda Wray. She said he has several more races coming up.

Despite the gray skies and light rain Saturday, about 75 people participated in the run.

Mayor Scott Davis was present to blow the air horn to signal the start and he also presented a proclamation making it “Casey Wray Day.”

Hydrocephalus is a condition where cerebrospinal fluid builds up around the brain. The excessive liquid can lead to abnormal widening of spaces in the brain called ventricles and creates pressure on the tissue. Symptoms can vary as can the cause.

It happens in about one or two people per 1,000.

Symptoms may include vomiting, sleepiness, irritability, downward deviation of the eyes and seizures. Other possible symptoms are loss of coordination or developmental delays. The disorder is typically treated with a shunt that diverts fluid to another part of the body.

The event benefited the Pediatric Hydrocephalus Foundation, an all-volunteer nonprofit that raises awareness about hydrocephalus and provides support to families and children affected by the brain condition. PHF also raises money to find new treatment options, advocates on behalf of the members of the hydrocephalus community, and lobbies policy makers. Visit www.HydrocephalusKids.org for more information.

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Source: The Colonial Voice

The Pediatric Hydrocephalus Foundation hosts a number of family activities around Woodbridge to raise money and awareness of a pediatric brain condition.

Skyline Mini-Golf had a line full of families on Saturday morning during an event meant to raise awareness of a childhood brain condition.

The Pediatric Hydrocephalus Foundation was founded by Woodbridge residents Michael and Kim Illions in 2009, after their son, Cole, was diagnosed with the brain condition.

The foundation has since grown to include 35 state chapters and one in Africa, according to the Illions.

Proceeds from the event came from 16 hole sponsorships on behalf of Woodbridge businesses and individuals, including Mayor John McCormac and Assemblyman Craig Coughlin, Michael llions said.

The “family fun” event was intended to raise awareness among participants, who were charged the same rate as Skyline Mini-Golf charges at any other time, he said.

The Pediatric Hydrocephalus Foundation’s next event will be a spaghetti dinner from 2-6 p.m. Nov. 3 at the Edison Elks, 375 Old Post Road in Edison. Tickets are $12 for adults and teenagers, $6 for children ages 5-12 and free for children ages 4 and younger. A 50/50 raffle, silent auction and basket raffle will be held.

Visit www.HydrocephalusKids.org for more information.

Race to find a cure for local child’s life-threatening condition

COLONIAL HEIGHTS – Watching wrestling and whizzing by at high speeds during 5K and 10K races are two of 10-year-old Casey Wray’s favorite activities. So when his parents Belinda and Chris Wray asked what he wanted to do for his birthday next month, Casey said that he wanted to race in another 5K.

But the race is not just a gift for Casey; proceeds from the PHF Virginia 2013 5K will benefit the Pediatric Hydrocephalus Foundation. The race is on Oct. 12, two days after Casey’s birthday, and starts at 7:30 a.m.

The cause is near to the hearts of his family because Casey suffers from hydrocephalus, or “water on the brain.” The condition causes the brain to swell because of the buildup of fluid in the brain’s ventricles. The only treatment for the condition is brain surgery to insert a shunt to drain the fluid. But these shunts only last a couple of years so many people have as many as 14 of these major surgeries in a lifetime.

Casey has had two shunts so far. The shunts have side effects as well, such as causing him to develop low muscle tone. Casey also suffers from a low-grade migraine daily, but his pain is controlled by medication. Pressure changes in the weather and congestion from colds and allergies can also cause shunt failure.

“Every time he has a headache we say is it a headache or is the shunt failing,” Chris Wray said.

But that doesn’t stop Casey from doing a lot of the things boys his age enjoy. In April, he and his family received an all-expense paid trip to WWE’s WrestleMania from the Make-A-Wish Foundation.

Over 86,000 people were in attendance with over 30 Make-A-Wish families. To be eligible to participate in the Make-A-Wish program, children must have life-threatening illnesses.

Racing is another chance for Casey to have fun.

A company called Inclusive Racing makes his participation possible. The nonprofit gives those with disabilities race strollers that can be pushed by runners making up a race team. Casey’s first race was the Shamrock 5K in March. He was also in the Monument Avenue 10K in April where the team’s official time was 30 minutes.

“He has developed a love of racing. His favorite thing to say is ‘go faster,'” Belinda Wray said.

The family is receiving help from United Athletics to make the October race a reality. United Athletics pairs athletes with individuals who need assistance participating in sporting events. Local businesses have also stepped up with donations.

His 12-year-old sister is also working to promote awareness of his condition.

She is creating a disability awareness day where vendors representing nonprofits and other organizations supporting those with disabilities can reach out to the community.

Belinda Wray said that the race was a great opportunity for Colonial Heights residents to do something new and include those with disabilities. As of last week, three assisted teams signed up for the race.

“It’s something Colonial Heights hasn’t seen before,” she said. “It will help disabled people know that there are things to do even if they have to do them differently.”