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  • PHF In The News: Easthampton fundraiser raises money for research into debilitating condition

    May 13, 2017 by  
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    bingophf

    EASTHAMPTON, Mass. (WWLP) – One Hampshire County parent prays that one day science finds a cure to the disease that’s afflicted her daughter since birth.

    Denise Sacharczyk of Westhampton organized a fundraiser Sunday at the American Legion Post 224 in Easthampton. Her daughter suffers from Hydrocephalus, or as it is more commonly called, “water on the brain.”

    Sacharczyk told 22News, “My daughter has had 23 brain surgeries because of that. She lives with chronic pain, any day not being able to walk. A couple of times, she’s had surgeries and learned to walk all over again.”

    Sacharczyk is active in the Pediatric Hydrocephalus Foundation on behalf of her daughter and other young people suffering from “water on the brain.”

    It’s estimated that out of 1,000 newborns, two will be afflicted by this disabling condition.

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    PHF In The News: Westhampton mother, daughter raise money for medical research

    September 23, 2016 by  
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    WESTHAMPTON — When Isabella Sacharczyk was about a month old, she was diagnosed with hydrocephalus, an incurable condition known as “water on the brain.” Doctors told her parents she would not be able to walk, talk, hear or see, and recommended that Isabella be put in a home for children with those disabilities.

    “We chose not to,” her mother Denise Sacharczyk said. “We were going to do whatever we had to do to give her the best quality of life.”

    Today, 18-year-old Isabella is a senior at Hampshire Regional High School. She is ranked 16th in her class with a 3.95 grade point average and aspires to become a medical researcher.

    To raise awareness and money for hydrocephalus research, Isabella and her mother are hosting a fundraising walk at Hampshire Regional High School from 10 a.m. to 1 p.m. Saturday through the nonprofit Pediatric Hydrocephalus Foundation.

    After searching for a support group, about three years ago, Isabella and Denise became involved with the organization, and now head the Massachusetts state chapter. Last year, the mother and daughter hosted their first walk at the high school. About 80 people attended and the event raised about $6,000.

    The cause of hydrocephalus can vary person to person.

    Isabella’s hydrocephalus was due to damage from E. coli meningitis and a related stroke.

    A shunt is surgically placed to drain fluid from the brain and release pressure. Isabella has two of the devices which move fluid from one part of the body to another.

    “Pretty much the shunt saves her life,” Denise said. “Without it she would die.”

    Isabella has had 23 brain surgeries due to malfunctions or complications related to the shunt, with six of those surgeries were in 2011.

    “One in three shunts don’t make it six months,” before malfunctioning, Isabella said. “So the odds aren’t great.”

    After one surgery in 2013, Isabella had to learn how to walk again.

    “She could be perfectly fine today and tomorrow she could be in the emergency room,” her mother said.

    Isabella has trouble with fine motor skills, walks with a cane and experiences headaches on a daily basis. She cannot take notes in school and her memory is not great, but she spends hours studying at home, using notes provided by her teachers.

    For exercise, Isabella rides a tricycle, though she joked that she “managed to fall off.” Her mother bought a matching one to go on rides with her daughter.

    “I don’t let my condition hold me back,” Isabella said.

    The “Funding a Cure for Hydrocephalus” walk on Saturday will feature a bounce house, music, concession stands and a raffle. Students can volunteer at the event for community service hours.

    To register or donate, visit active.com/donate/phfwalkma2016.

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    ‘Bella’s Journey’ to raise funds against brain disease

    July 2, 2016 by  
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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

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    Bella’s journey to raise Hydrocephalus awareness

    August 29, 2015 by  
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    A 16-year-old suffering from the incurable brain condition fundraises for a cure

    bellapaper 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.”

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    Benefit set for teen with incurable brain condition

    August 7, 2015 by  
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    Pediatric hydrocephalus is treatable but has made it difficult for girl to walk

    A benefit is planned later this month in Horseheads for a 16-year-old girl with pediatric hydrocephalus, an incurable but treatable brain condition that has made it hard for her to walk.

    Raymour & Flanigan and the Pediatric Hydrocephalus Foundation will host “Bella’s Journey” from noon to 5 p.m. Aug. 16 at the furniture store, 137 Colonial Drive in Horseheads. It will feature live music, face painting, games, activities, a bake sale, raffles and more. Prizes included a $100 Raymour & Flanigan gift card. All proceeds will benefit the foundation.

    The benefit is being held for Isabella Sacharczyk, 16, from Westhampton, Mass., who will be there with her mother, said Michael Illions, vice president and national director of advocacy for the foundation. Bella has made it her mission to raise money for the foundation, he said.

    The foundation provides support those affected by hydrocephalus, seeks to raise awareness and works with the medical community to find a cure.

    Bella’s grandmother, Jeannine Zimmer of Horseheads, said she is friendly with Nicole Gulich, the former manager of the Raymour & Flanigan store in Horseheads who is now a district manager. Her son also has disabilities, she said.

    Bella told Gulich her story and the amount of brain surgeries she has had, and this event was created from that connection, Illions said.

    “She’s had 20 brain surgeries. The last one she had,” Zimmer said, “was to help her mind and her legs to work together. She can’t walk well. She walks with a cane, and she does wear braces, but she doesn’t wear them all the time.”

    Her granddaughter, who turns 17 next month, was 2 months old when she was first diagnosed with pediatric hydrocephalus, she said. “She got bacterial meningitis, which caused hydrocephalus,” she said.

    Hydrocephalus, also known as “water on the brain,” is the accumulation of cerebrospinal fluid inside the brain, according to Johns Hopkins Medicine. This can be a very dangerous condition, as the normal production and recycling of spinal fluid throughout the neurological system is disrupted. There is no cure, but hydrocephalus can be treated surgically.

    “She didn’t go to school this whole last year after the surgery she had because she couldn’t walk well enough to go, so she was tutored at home, and she did marvelous,” Zimmer said.

    “The sad part with Bella is she’s gone to the same high school as kids that she grew up with,” she said, referring to Hampshire Regional High School. “But when they found out that she had a disability, the kids stopped asking her to come over to their house. So she doesn’t have a lot of friends, but she does have some friends. She’s a homebody.”

    Follow Ray Finger on Twitter @SGRayFinger.

    How to help

    To make a tax-deductible donation, mail a check payable to the Pediatric Hydrocephalus Foundation to Kim Illions, Pediatric Hydrocephalus Foundation Inc., 66 Caroline St., Second Floor, Woodbridge, NJ 07095. Donations can also be made online by credit or debit card by clicking here.

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