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  • As she battles brain disease, Isabella Sacharczyk is on a mission to help others

    October 18, 2017 by  
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    bellagazette
    WESTHAMPTON MA — “Water on the brain.”

    These are the words that echoed in Denise Sacharczyk’s mind on one of the worst days of her life.

    A doctor called to tell her that her newborn daughter, Isabella, had hydrocephalus, the buildup of fluid in the brain. The 2-month-old had fought for her life from bacterial meningitis and wasn’t expected to live. The infection led to a stroke, which led to the fluid. A deadly amount of pressure has risen inside the child’s skull.

    Isabella was rushed by ambulance to Boston for brain surgery, leaving her mother and father, Kenneth, distraught. Doctors said she would never talk or walk. They questioned whether she would ever see or hear.

    “They told us that we should probably think about putting her in a home for kids like her,” says Sacharczyk. “We chose not to do that, naturally.”

    That was 19 years ago and Isabella Sacharczyk is still here. A freshman at Holyoke Community College, she lives with her family in Westhampton. She also lives with hydrocephalus which never went away. She has undergone 23 brains surgeries, so far, but there is no cure. The fluid is not exactly water, but more like a saline, that collects around the brain. It creates constant pain in her head.

    “She has lived such a life of pain, even just trying to go to school can be really hard,” says her mother.

    Isabella Sacharczyk looks like an ordinary teenage girl, petite with wavy brown hair down to her shoulders. She has exceeded all expectations. She not only walks and talks, she plans to pursue a doctorate in computational biology after she completes her undergraduate studies in computer science. One day she hopes to work alongside researchers in the laboratory at Boston Children’s Hospital to help find a cure for hydrocephalus. In the meantime, she and her mother hold regular fundraisers in conjunction with the Pediatric Hydrocephalus Foundation, an organization based in New Jersey to advance research for children; they have a crafts fair scheduled for Saturday at Eastworks in Easthampton (See box below).

    “I’ve made it my mission to hopefully be part of the team that cures hydrocephalus or finds better treatment,” Isabella says.

    A lifetime of misery

    Hydrocephalus affects more than 1 million Americans in every stage of life, from infants to the elderly. One to two of every 1,000 babies are born with it, making it as common as Down’s syndrome, according the the Hydrocephalus Association, an organization based in Maryland.

    “There are approximately a hundred reasons why someone might develop the condition,” says Dr. Thomas Kaye, Chief of Neurosurgery at Baystate Medical Center in Springfield. It most often affects people at the end or beginning of life, coinciding with conditions like birth trauma or dementia.

    Most healthy people’s brains produce two cups of fluid every day that is then absorbed back into the body. When the natural absorption process goes haywire, the typical treatment is surgery to implant a mechanical system including a valve and tubing inside the brain to drain fluid to another part of the body, often to the lining around the stomach or the lungs. But it’s not uncommon for these systems to fail, says Kaye.

    “The (tubing) that they put in is basically a Band-Aid — it’s a mechanical device that has the highest failure rate of all mechanical devices put into a body,” Denise Sacharczyk says.

    Isabella has spent a large percentage of her young life in hospital beds. She’s had thousands of MRIs and CT scans. Sometimes the tubing that drains fluid into other parts of her body will start to deteriorate, catch on scar tissue, and Isabella will start to get sick. Her mind goes foggy, she can’t read, or concentrate. She gets tremors in her legs, her eyes become bloodshot.

    “Bella lives every day with the uncertainty that at any moment her shunts could fail,” Denise Sacharczyk says. They could break, become infected or clogged, which means she is being rushed into surgery — brain surgery — again, she says.

    Isabella recalls one particularly rough year: “I had six surgeries, back to back within months of each other.”

    In ninth grade, at Hampshire Regional High School in Westhampton, Isabella would regularly take refuge in the nurse’s office, often spending the entire day there. Sometimes her sister, Victoria, 16, would help her with school projects when she wasn’t feeling well. In 10th grade, the pressure inside her skull caused her brain to press onto her spine causing hemorrhaging. After an emergency surgery to push her brain back up she woke up and couldn’t walk. She spent the next 10 months regaining her motor skills. She still has to use a cane. And every day she remains vigilant, not knowing if the drainage system in her brain will fail.

    Moved to action

    Despite all of this, Isabella Sacharczyk has found a bright spot related to her disease — a passion to dedicate her life to finding a cure and better treatments that will help others.

    Four years ago, when the family was looking for support, they connected with the Pediatric Hydrocephalus Foundation. Through the organization they were able to meet other families who have children with hydrocephalus. And now, as Massachusetts state chapter co-directors, the Sacharczyks host regular events to raise awareness and money to find a cure. So far they have held three annual walks at Hampshire Regional High School, with the most recent one in September. They also hold an annual carnival-themed fundraiser in New York state where they have family.

    Last year’s fundraisers raised $12,000 for research at Boston Children’s Hospital. One of the doctors from the hospital attended the walk at Hampshire Regional and invited Isabella to visit the laboratory in Boston to shadow the researchers. She spent last summer observing their work.

    In addition to holding fundraisers, mother and daughter have traveled to Washington D.C. to lobby for more funding to study the disease.

    “We go and we storm Congress with all the folks from across the country,” Denise Sacharczyk says.

    Isabella still has some difficulty with balance and spasticity in her legs, but it’s been two years since the drainage system in her brain has failed, the longest she has gone between operations since her first one at 2 months old.

    Her mother often thinks of the grim prognosis doctors gave her newborn.

    “I think about that all the time — being that scared, brand new mom 19 years ago in the hospital. Hydrocephalus has this huge stigma that your child is not going to do anything, but our children are growing up and doing wonderful things.”

    “She is my miracle girl.”

    Lisa Spear can be reached at Lspear@gazettenet.com

    Shop for a Cure

    A craft and vendor fundraising event to benefit hydrocephalus research.

    When: Saturday, 10 a.m. to 4 p.m.

    Where: Eastworks 116 Pleasant St., Easthampton

    What: Vendors will sell handmade crafts like crocheted scarfs and quilted flowers to help fund hydrocephalus research at Boston’s Children’s Hospital.

    Contact: Call 413-246-9725 for more information.

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

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    Fundraiser held for teenager battling incurable brain condition

    August 2, 2017 by  
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    bellasjourney2017
    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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    ‘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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