HORSEHEADS, N.Y. (WENY) – Raymour and Flanigan is partnering with the Pediatric Hydrocephalus Foundation to host the 4th annual “Bella’s Journey” Fundraiser event.

The event is happening today at Raymour and Flanigan in Horseheads from 12-4 pm. The event is for 19-year-old Bella Sacharczyk, who is living with Pediatric Hydrocephalu also known as, PHF. Bella is a survivor of 23 brain surgeries, her mission is to raise awareness and money to fund research projects for the disease. “Bella’s Journey” has resulted in $25,000 being raised in research grants over the last 3 years. The fundraiser is open to the public and is kid friendly.

There will be food, baked goods, raffles, kids games, a bounce house, music and much more. There is also a new 60 mile Motorcycle ride that has been added to this year’s fundraiser.

If you want to know more about the condition, click here.

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16-Year-Old Madison Fleming From New York Selected as 2018 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Madison was born four weeks early and weighed 4lbs 4oz. Three weeks after Madison was born she was diagnosed with Hydrocephalus caused by a cerebral hemorrhage. After numerous fontanelle taps she had her first shunt placed at 1 month old. Since her first shunt was placed she has had 5 emergency brain surgeries to replace/fix the shunt. Four of those emergency brain surgeries were within 9 months of each other.

Other than the brain surgeries that Madison has gone through she has also faced eye surgeries, learning disabilities, debilitating migraines, and years of physical therapy.

With all the challenges that Madison has faced she has pushed herself to compete in ice hockey, lacrosse, cross country and horseback riding.

3-Year-Old Owen Davidson From Tennessee Selected as 2018 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Owen was born October 20th 2014 along with his twin sister Shelby. When he was born, he was having a hard time breathing. They sent him to East Tennessee Children’s Hospital. The first few days were rough. They diagnosed him with SVT. It’s a heart condition. Then as days passed they told us he had a IVH grade 3 on the left and grade 4 on the right brain bleed. Then they said this word.. (Hydrocephalus).

As parents we didn’t really understand what this was. So we did our research and we were heartbroken because we didn’t know when, why, or how this happened. We wanted answers, but they really couldn’t tell us anything. They did so many taps to keep the fluid off, we lost count. He had to have 2 blood transfusions.

He was too little to have the surgery. So at 1 month of age the VP Shunt was placed. Everything went great, he came home after a 40 day nicu stay. At 15 months he was diagnosed with cerebral palsy. We were heartbroken again. They first said spastic quadriplegic CP. Then changed it to mixed cerebral palsy.

At 18 months of age he had his first revision and, oh my goodness, this was bad. We almost lost him because we couldn’t get anyone to listen to us. All they would stay he doesn’t have the symptom of a shunt malfunction. No tests were done. So we had enough. We took him to the ER at the Vanderbilt children’s hospital.

The scan came back yes his shunt has malfunction and he needs surgery right now. During the surgery while they were removing the other shunt he had another brain bleed. So they had to do a EVD til all the blood was gone. So after 23 days in the picu his vp shunt was placed.

Owen has had other surgeries not hydro related. But Owen is one true fighter. He has a lot of family supporting him in this journey. He has his Mother Crystal, Father Rodney, brother Hunter, sisters Cheyenne and Faith and his twin sister Shelby. We all love him unconditionally. He always keeps a smile on his face. He is a true inspiration.

The PHF is looking for one boy and one girl to serve as our National Spokesperson for our 2018 National Hydrocephalus Awareness Campaign.

These 2 National Ambassadors will be featured in marketing and promotional materials all through the year ending in September 2018 with National Hydrocephalus Awareness Month.

The National Ambassadors & their families will receive a 2 night complimentary stay @ the Embassy Suites Hotel for the 2018 PHF Issues & Action Hydrocephalus Conference in Washington, DC on August 16th & August 17th. (Travel not included.)

We will randomly select ONE boy and ONE girl from all entries received. Submit a picture of your nominee, between the ages of newborn to 19 years old, with their name and D.O.B. (These pictures MUST BE E-MAILED to mike@hydrocephaluskids.org- Facebook entries are not valid)

To enter, email a picture of your nominee, (between the ages of newborn to 19 years old), with their name, D.O.B. & current city & state)

Contest ends 12/31/2017 & Winners announced on 1/2/2018
* Submit one picture of your nominee*, between the ages of newborn to 19 years old, with their name, D.O.B., and location. (*By submitting a picture you authorize the PHF to use the picture for promotional purposes).
* Previous winners are not eligible.
* Only one entry per child will be accepted. Siblings with Hydrocephalus can be entered separately.
* PHF Board of Directors & State Chapter Directors are eligible to participate and enter their child.

Check out the picture galleries of everyone who has been entered:

FAIRFIELD, Conn. — ZenRide Spinning Studio and Fairfield residents Cindy and Tim Shanley on Oct. 22 will present the 3rd annual “Biker-Barre” to help fund a cure for hydrocephalus, a brain condition the Shanleys’ little girl lives with every day.

Located at 869 Post Road, ZenRide will offer a spinning and Bar Method combo class at 3 p.m. After that, participants can stay on for refreshments and a silent auction to benefit the cause.

All proceeds will go to the all-volunteer Pediatric Hydrocephalus Foundation.

The Shanleys support the effort to honor their daughter, Reagan — “Rae Rae” to her friends and family — who has hydrocephalus, and to raise both awareness and research dollars.

The last two Biker-Barre events have raised almost $20,000 each.

The event’s success allowed the Shanleys to create the Reagan Sloane Shanley Scholarship for applicants interested in neuroscience and/or engineering who have a special interest in better understanding hydrocephalus, cerebral spinal fluid and the brain.

A $40 donation reserves a bike for the spinning class.

To register, visit zen-ride.com/reserve.

To make a donation, visit active.com/donate/phfzenride2017.

To learn more about hydrocephalus, visit www.HydrocephalusKids.org.
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