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.

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.

Matthew Elicea, one half of the PHF’s “National Face of Hydrocephalus Awareness” winners, was featured in a TV Interview on California’s KGET-TV Channel 17.

9-Year-Old Matthew Elicea From Bakersfield Selected as National “Face” of Hydrocephalus Awareness for Incurable Brain Condition

Bakersfield, CA – When looking quickly at 9-year-old Matthew Elicea, one would see a happy, athletic, & energetic boy. When you look a little closer and see the scars and stitch marks on his head, a different story is being told.

Matthew suffers from an incurable brain condition called Hydrocephalus, and the scars and stitch marks are the result of the multiple brain surgeries to implant the device in his brain, known as a shunt, that keeps him alive.

Occurring in approximately 1 of every 500 births and in over 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.

Untreated, Hydrocephalus could be fatal.

Matthew was selected as one of two children to serve as this year’s “National Face of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Matthew, whose family lives in Baskersfield, will represent the boys, while 7-month-old Aila Elmore of Indiana will represent the girls.

Debra Shoulet, Matthew’s mom, is ecstatic that her son will be the “Face” of Hydrocephalus Awareness for the Hydrocephalus Community in 2013; “One thing we believe we can do, is provide hope to parents, like us, who are given the heartbreaking news that comes with a diagnosis of hydrocephalus. There is HOPE!!! Miracles do happen! We live with a miracle. And some times those miracles are as small as a smile!”

Matthew will be featured in advertisement campaigns & promotional materials for Hydrocephalus Awareness as we head towards the 5th Annual “National Hydrocephalus Awareness Month” in September.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 30 state chapters, provides support to families, friends and children affected by this incurable brain condition.

PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF 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. Donations are tax-deductible.

Since 2010, PHF awarded $170,000 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for research and education. For information, visit HydrocephalusKids.org.