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12-Year-Old Madelyn Edgecomb From California Selected as 2015
National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Madelyn was diagnosed with congenital hydrocephalus due to aqueductal stenosis in utero at 21 weeks. She was born at 35 weeks and had first shunt placed at 1 day old. She has had 29 revisions,1 successful ETV and 4 chiari malformation surgeries. She currently is shunted along with the ETV.

Her neurosurgeon is Dr. Peter Sun of UCSF Benioff Children’s Hospital Oakland, (formally Children’s Hospital Oakland), who is amazing! Her shuntaversary is tomorrow and it will mark 1 year since her last revision! Madelyn loves to listen to music,reading, school,and making crafts. Madelyn loves her family and friends.

We are ecstatic to have Madelyn to be chosen as the female representative.Thank you to everyone for all the support over the years. I want to thank all the families of children who have hydrocephalus, for their continuous support.

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.