Read the entire story here:

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.