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.”

Click to Enter the Hydrocephalus Awareness MONEY BOMB Donation Website!

PHF September 30th Hydrocephalus Awareness MONEY BOMB!!!

“ONE DAY….. ONE DONATION”

The Pediatric Hydrocephalus Foundation (PHF), the nation’s #1 advocate for children with Hydrocephalus, needs your help Today for our Hydrocephalus Awareness MONEY BOMB to raise funds for our outstanding initiatives & Hydrocephalus research project funding rolling out in 2013 and beyond!

The PHF is dedicated to raising the level of awareness of this incurable brain condition, providing support to those who are diagnosed with Hydrocephalus, and most of all raising money to help fund a cure and better treatment options for our children!

In 2009 the month of September has been named “National Hydrocephalus Awareness Month” and this year has been OUTSTANDING! The outpouring of support the PHF has received from around the country has been INCREDIBLE!

But we need your help TODAY to make it our best month ever for fundraising.

So we’re asking everyone to participate in the first ever Hydrocephalus Awareness MONEY BOMB Today so we can end this year’s Hydrocephalus Awareness Month with a bang, and keep the momentum going for the next few months and into 2014!

If every supporter of the PHF who believes in our mission and wants to support the outstanding success we have had as advocates for children and families affected by Hydrocephalus contributes Today, we’ll have a record-breaking fundraising success.

We are counting on you to contribute and push the PHF to new heights!!! Click below, and thank you for your generosity!!!

Join us for this special On-Line Fundraising event- PHF’s Hydrocephalus Awareness MONEY BOMB!

“ONE DAY….. ONE DONATION”

The Pediatric Hydrocephalus Foundation is a non-profit 501 (c) (3) non-profit charitable organization. All donations are tax-deductible.

Click to Enter the Hydrocephalus Awareness MONEY BOMB Donation Website!

Play mini-golf on Oct. 5 to raise money to research and cure the condition.

The Pediatric Hydrocephalus Foundation invites Woodbridge families to Skyline Mini-Golf on Saturday, Oct. 5 for a fundraising event that will benefit children with the brain condition.

At 10 a.m. Oct. 5, Mini-Golf Family Fun Day will entail rounds of mini-golf, giveaways and door prizes.

The day’s guests of honor are Anthony Pascale and Cole Illions, two eight-year-old boys living with the condition who have undergone a total of 15 brain surgeries, according to a press release from the Pediatric Hydrocephalus Foundation.

Cole Illions’ parents are Michael and Kim Illions, Woodbridge residents and founders of the Pediatric Hydrocephalus Foundation.

Admission is $7 for adults, $5 for children.

Visit www.HydrocephalusKids.org for more information.

Contact Kimberly Illions at 732-634-1283 or kim@hydrocephaluskids.org for more information.

GRAVES COUNTY, Ky – A local boy is fighting a lifelong, rare, incurable disease. Hydrocephalus or more commonly known as “water on the brain” is when fluid builds up inside the skull and leads to brain swelling.

Ten-year-old Payton Kraft often finds himself playing alone.

“Other kids don’t understand what I go through. None of them do,” said Payton.

“Payton was probably 3 to 4 months old and we noticed he wasn’t progressing like normal children do. He was delayed,” said Payton’s mother, Sarah Wilson-Kraft.

That delay, had Payton’s mom, Sarah panicked something was wrong.

“His head was extremely large for his age…They measured his head many of times and they sent us for a cat-scan and that’s when he was diagnosed,” said Wilson-Kraft.

Payton was diagnosed with Hydrocephalus, which is an incurable, brain disease.

“There was a lot of fear, unknowing what was going to happen and concern for him,” said Wilson-Kraft.

September is National Hydrocephalus Awareness month. Payton’s mom is raising funds with arts and crafts with the hope of one day finding a cure.

“The only thing we can do is pray everyday there’s no infection,” said Wilson-Kraft.

In the meantime, a shunt was placed in Payton’s brain.

“It’s in the center of his head, that goes down his neck into his stomach and drains the fluid out,” said Wilson-Kraft.

Payton considers himself a fighter, but he says every now and then his shunt hurts him. He vows to never give up and to continue educating others about his condition.

“I hope one day that there will be an end to this,” said Payton.

In her spare time, Payton’s mom, Sarah Wilson-Kraft, spends her time crafting to help fundraise for a cure to Hydrocephalus. She makes scarves, wreaths, bracelets, ribbons and bows, rugs and tu-tu’s. To check out those items and help fundraiser for Hydrocephalus, click here.

To donate to Payton and help fund a cure for Hydrocephalus, click here.

FRESNO, Calif. (KMPH) –

Carrie Awbrey, California Chapter Director for the Pediatric Hydrocephalus Foundation, visited Great Day to talk about a perilous condition more commonly known as “water on the brain.”

The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition.

The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.

The PHF will raise money for and work with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus.

The PHF, Inc. is a non-profit 501 (c) (3) charitable organization and as such, all contributions are tax deductible to the extent allowed by law.

Additionally, the PHF will advocate on behalf of the members of the Hydrocephalus community and work with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus.