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.

PHF Michigan State Chapter Co-Director’s Jason & Carmen Adams and Donna West are featured in the September Issue of The Altum Advocate

Durangoan, whose son has hydrocephalus, pressed for Colo. representatives’ support

The proclamation by Gov. John Hickenlooper designating September as Hydrocephalus Awareness Month came through the effort of a Durango woman whose son has the condition.

Christina Brown drafted a proclamation in mid-July and sent it to the governor’s office. She learned a month later it had Hickenlooper’s signature.

Brown’s son, 3½-year-old Jaden, has hydrocephalus, a swelling of the brain caused by an accumulation of the fluid that surrounds the brain and spinal cord, a condition found in one in 500 births.

About 1 million adults and children in the United States have hydrocephalus.

Brown said she found support from the region’s representatives in Washington, D.C., when she visited Capitol Hill with 140 members of the national Pediatric Hydrocephalus Foundation last week. The contingent represented the country from coast to coast.

Brown is the founder and director of the Colorado chapter of the Pediatric Hydrocephalus Foundation. She can be reached at christina@hydrocephaluskids.org.

She said U.S. Sens. Mark Udall and Michael Bennet and U.S. Rep. Scott Tipton appeared receptive when she urged them to support efforts to fund hydrocephalus education and research.

Brown said Jaden is doing very well and is receiving speech, physical and occupational therapy.

Contact Christina Brown at christina@hydrocephaluskids.org for more information.

The walk begins at 11 a.m. Saturday at Roosevelt Park in Edison.

The Pediatric Hydrocephalus Foundation will once again lace up their walking sneakers on Saturday for the 7th Annual Walk & Family Fun Day.

The day will begin at 11 a.m. Saturday, Sept. 7 at Roosevelt Park in Edison, and is free.

Donations will be accepted to benefit the Pediatric Hydrocephalus Foundation, a nonprofit organization founded by Woodbridge residents that raises awareness of the brain condition and money for a cure.

The day will include face painting, music, refreshments, “Jedi Knight Training” and appearances by characters from Star Wars, according to a press release from the organization.

Registration for the walk open at 10 a.m.

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