4-Year-Old Owen Rush From South Carolina Selected as 2014
National “Face” of Hydrocephalus Awareness for Incurable Brain

Owen was diagnosed with hydrocephalus in utero at 20 weeks. We were well prepared for his arrival the week before Christmas, though nervous but exited as well. Our miracle was born at 37 weeks on December 17, 2009 with an OR full of staff and no complications. He stayed in NICU for 5 days with a small amount of feeding issues. He was discharged a few days before Christmas and we spent the rest of holidays with our family.

He had his initial VP shunt placed on January 5th and we came home 4 days later. He had his first emergency shunt malfunction on Mother’s Day 2010, his second shunt malfunction was a few weeks later on Father’s Day. Few weeks later he was back in for another shunt revision. This time they changed the shunt location and type, it was placed on the top right side of his head and programmable. All things were well until Thanksgiving 2010 he had a skull repair on his old shunt site, they used a plate and screws to fix the bone that wouldn’t seal up.

All these surgeries before our miracle turned 1 years old. He had his first seizure at 10 months old. since then hes tried 10 different medications an still having seizures on a daily basis. We traveled to Le Bonheur’s Children’s hospital in Memphis Tennessee in October 2012 and the team confirm he wasn’t a good candidate for any type of Epilepsy surgery, and were told how severe his developmental delay was after being through an intense evaluation, which we already knew and was shortly diagnosed with Autism.

We then traveled to Duke Hospital in NC for a Vagal Nerve Stimulator in August 2013 in hopes to improve his epilepsy and overall quality of life. He can’t feed himself, dress himself, he’s not toilet trained, nor can he tell you If he’s in pain or say I love you yet! He has been in Occupational, Physical and Speech Therapy since he was 4 months old.

He started school when he turned 3 to a school for the most disabled children in our county. Owen has adapted very well with the routine and friends, and is most importantly loved unconditional by all the staff at his school. Despite Owen’s disabilities he never stops smiling or wanting hugs.

We will randomly select ONE male and female from all entries received. Submit a picture of your nominee, between the ages of newborn to 19 years old, with their name and D.O.B. (These pictures MUST BE E-MAILED to mike@hydrocephaluskids.org- Facebook entries are not valid)

The 2 winners will be awarded $250.00 donations in their name to a 2014 Hydrocephalus Research Project & a 2 NIGHT STAY @ the Embassy Suites in Washington DC during our 4th Annual PHF Day of Hydrocephalus Awareness on Capitol Hill Event on 8/21 & 8/22 in 2014, (travel not included).

To enter, email a picture of your nominee, (between the ages of newborn to 19 years old), with their name, D.O.B. & current city & state)

Contest ends 12/31/2013 & Winners announced on 1/2/2014
* Email your picture to mike@hydrocephaluskids.org
* Previous winners are not eligible.
* PHF Board Members & State Chapter Directors ARE eligible to participate.
* By submitting a photo, you agree that the picture may be used in promoting this contest, promotional materials for the PHF, and other PHF outreach campaigns.

Check out the picture galleries of everyone nominated:

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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