A 19-year-old survivor of 23 surgeries marks a milestone
August 3, 2018 by PHF
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HORSEHEADS, N.Y. (18 NEWS) – Imagine having more surgeries than you are years old. That’s exactly what 19-year-old Isabella Sacharczyk has gone through, 23 times, in her brain.
“It’s very, very hard, to be honest with you, I didn’t let her sleep by herself until she was 16,” Denise Sacharczyk, Isabella’s mother, said. “I was scared to death that something would happen while she was sleeping.”
Hyrocephalus is the neurological condition Isabella was born with. It’s caused by too much fluid pressing on the brain. She has two medical devices, known as shunts, put into her brain, to drain excess fluids.
October will mark four years Isabella has been surgery free.
“It feels great, because I went a good six years with at least having one surgery a year, and as a little seventh grader, I missed three months of school that year,” Isabella Sacharczyk, said.
Today also marks four years of fundraising for “Bella’s Journey”. Isabella and some of her family flew from their home state, Massachusetts, to fundraise here, in Horseheads, where most of her family resides.
This annual “Bella’s Journey” event is a fundraiser for education and research for Hydrocephalus.
A 60 miles motorcycle ride is the newest addition to this annual event.
“A lot of motorcycles get together for a lot of charity rides like this because there are so many negative things in the world being said about motorcyclists and I think it’s a good thing that all these people, a nice group of people are getting together and doing a charity ride for a common cause,” Olavs Ozolins, road captain at the Finger Lakes New York H.O.G. group, said.
“Just the love of children, you know, whatever we can do to help is great,” Hazel Hall, a member of the Finger Lakes New York H.O.G. group, said. “As we’re out riding, it seems like everybody waves at us, toots at us, you know, it makes us feel real welcomed.”
Isabella is now studying for her doctorates to become a medical researcher.
Fundraiser happening Sunday for teenage girl battling incurable brain condition
August 3, 2018 by PHF
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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.
Fundraiser held for teenager battling incurable brain condition
August 2, 2017 by PHF
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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.
‘Bella’s Journey’ to raise funds against brain disease
July 2, 2016 by PHF
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“Bella’s Journey” is coming back to the Southern Tier.
Raymour & Flanigan, in Horseheads, will host the second annual local fundraising event in partnership with Pediatric Hydrocephalus Foundation and 17-year-old Bella Sacharczyk.
The teenager lives with hydrocephalus, an incurable brain disease. She has survived 23 brain surgeries. Sacharczyk’s mission of raising awareness and money to fund research projects has resulted in a $7,000 research grant to one of the nation’s top pediatric hospitals.
The local fundraiser will be held from noon to 5 p.m. July 10 at the store, 137 Colonial Drive in Horseheads. There will be live music, face painting, games, activities, bake sales, raffles, silent auctions and vendors.
The Pediatric Hydrocephalus Foundation, an all-volunteer, nonprofit charitable organization, educates the community by raising the level of awareness about hydrocephalus, and provides support to families, friends and children affected by this brain condition.
The PHF also raises money for and works with the medical community in searching for a cure and additional treatment options for those with hydrocephalus. Additionally, the PHF advocates on behalf of the members of the hydrocephalus community, and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible. Visit HydrocephalusKids.org for more information.
Follow Kelly Gampel on Twitter @theSGphotos or on Instagram @kelly.gampel
Bella’s journey to raise Hydrocephalus awareness
August 29, 2015 by PHF
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A 16-year-old suffering from the incurable brain condition fundraises for a cure
HORSEHEADS, N.Y. (18 NEWS) –
Bella Sacharczyk is 16 years old. She’s smart, funny, and charismatic. A typical teenage girl. You would never guess that she’s had 20 brain surgeries, but Bella has Hydrocephalus, a incurable condition that involves water in the brain.
On Sunday, she joined together with her family and friends to raise awareness about the disease and fundraise for a cure.
“I feel it’s important for everybody to know about it and to raise awareness, just so that one day some children like me won’t have to suffer,” Bella said.
“We’re just trying to be out there anyway we can to raise awareness to raise funding for a cure,” Denise Sacharczyk, Bella’s mother, said. “There is no cure for children or people with Hydrocephalus.”
Even though people living with Hydrocephalus can experience some pretty serious physical and mental complications, Bella’s family wants people to know her struggles don’t define her or limit her.
“Hydrocephalus is, it can be scary, but doesn’t have to be scary… that the children like Bella, she does everything, she’s not afraid,” Denise said.
“I like to do my schoolwork, and I like to educate people about Hydro, hang out with my family,” Bella said.
Bella is grateful for all the support she got from our community.
“That everybody came here to support me… I feel loved and it’s the best feeling in the world.”