HORSEHEADS, N.Y. (WENY) — The community came together to help raise money for a teenage girl battling an incurable brain condition.
     On Sunday, the third annual “Bella’s Journey” fundraising event was held at Raymour and Flanigan in Horseheads.
     
     The event was created by the family of Bella Sacharczyk, who is an eighteen-year-old girl battling with Hydrocephalus. 
     
     Throughout the day there were many things for visitors to do to raise money and awareness for the condition. 
     “We’re having a basket raffle, all donated by different people in the community,” said Bella’s Mother and the Massachusetts State Chapter Director for the Pediatric Hydrocephalus Foundation, Denise Sacharczyk. “We have a bounce house and food. We had the radio station was here today and we’re just raising money for Hydrocephalus for the awareness of Hydrocephalus and for the research.”
     Since Bella has been diagnosed with the condition, she has had twenty-three brain surgeries and countless hours of physical therapy to learn how to walk again. 
     If you want to know more about the condition, visit http://www.hydrocephaluskids.org. 

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GRAND RAPIDS, Mich.— A Grand Rapids 6-year-old girl is sharing the experience of her 17th brain surgery for an incurable brain condition by writing a children’s book.

6-year-old Willow West has a condition known as Hydrocephalus, which is a buildup of too much cerebrospinal fluid in the brain. Normally the fluid acts as a cushioning for the brain, however the fluid puts a harmful pressure on the brain when there’s too much.

Donna West, Willow’s mother, says that for the first 18 months of Willow’s life, she underwent 12 surgeries. Normally there wouldn’t be this many surgeries for her condition, but she was allergic to the medicine that would normally help get rid of the fluid.

As Willow got older and attended school, many of her classmates asked her about the scars she had, and why Willow would miss class. She wanted her friends to understand her condition, she wrote the storybook, “Willow’s Last Surgery: A Journey with Hydrocephalus.”

“Willow’s Last Surgery” is a story from Willow’s point of view, explaining what hydrocephalus is and why she has to have brain surgery. Willow said that she hopes the book will help other children understand about their friends who have hydrocephalus.

“Willow’s story puts a great kid friendly explanation to a confusing brain condition,” Donna said.

Proceeds from the sale of the book will help the all-volunteer Pediatric Hydrocephalus Foundation.

The book is currently available on Amazon, but the book will debut in public on Saturday at the PHF’s Michigan WALK for Hydrocephalus Awareness.

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