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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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    Toddler Matthew Campuzano From Pennsylvania Joins His Big Sister as 2017 National Ambassador for Incurable Brain Condition

    January 6, 2017 by  
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    MEET MATTHEW CAMPUZANO

    Toddler Matthew Campuzano From Pennsylvania Joins His Big Sister as 2017 National Ambassador for Incurable Brain Condition

    Matthew was born in April 2015, our fifth baby. He was diagnosed with Hydrocephalus at 20 weeks, and he developed in uterine very similarly to Julia.

    phfambassadormatt2 Once again, the Doctor’s prepared us for the worst, but we knew that Matthew would be a fighter like his big sister. He was born at 35 weeks, and he spent a few weeks in the NICU to receive his first shunt and get over the hurdles of prematurity.

    Matthew still has the shunt that was placed when he was 3 days old. It’s been working wonderfully for him. He has been receiving physical therapy since he was 6 weeks old, but he will be discharged very soon!

    At 18 months, he is walking and talking up a storm. He is the family comedian, and he makes us laugh all the time! Matthew became a big brother this past summer, and he loves our new baby so much!

    At this point, while we know it’s there, they have not found the genetic cause for Julia and Matthew’s Hydrocephalus. We need more research so we can make advancements!

    6-Year-Old Julia Campuzano From Pennsylvania Joins Her Brother as 2017 National Ambassador for Incurable Brain Condition

    January 6, 2017 by  
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    MEET JULIA CAMPUZANO

    6-Year-Old Julia Campuzano From Pennsylvania Joins Her Brother as 2017 National Ambassador for Incurable Brain Condition

    Julia was born in October of 2010. She was our third child and the first girl! Our second son had passed away as an infant from a heart defect. At 20 weeks into my pregnancy, Julia was diagnosed with ventriculomegaly. As the pregnancy continued, the Doctor’s confirmed that she had severe Hydrocephalus.

    phfambassadorjulia2 We were told she may never walk, talk, see or function like an average child. We waited patiently for her arrival. She was born at 33 weeks, and she came out screaming. At 6 days old she received her first shunt. At 6 weeks old, she developed an infection and had her second and third surgery to remove and place a new shunt. She also developed epilepsy at this age.

    Julia has now had 5 brain surgeries, and she has come through them all with flying colors. She was behind in gross motor skills for the first two years of her life, but now she is doing wonderfully. Her epilepsy has given us a lot of trouble as we’ve navigated the vast array of medications and side effects, but she is well-controlled for now.

    She is now 6 years old and loving kindergarten. She is beginning to read and share her joy with the world. She is a special child who can cheer you up on your worst days.

    We can’t wait to see what the future holds for her!

    PHF In The News: Local girl heads to nation’s capitol

    August 22, 2016 by  
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    elysenews

    TOWN OF VERNON — This Friday, 7-year-old Westmoreland Elementary student Elyse Clough plans to address Congress, hoping to educate lawmakers on hydrocephalus and to seek their help in fighting it.

    Elyse and her family left this morning for Washington, DC despite her emergency surgery last Saturday.

    “She made it through, and she’s a real fighter,” Elyse’s father, Tom Clough, said. “And now we’re definitely heading out to speak on hydrocephalus.”

    Elyse, who aspires to be a pediatrician, has been named National Ambassador of Hydrocephalus Awareness for 2016 by the Pediatric Hydrocephalus Foundation. On Friday she will join her parents and 23 other members of Research, Educate, and Cure Hydrocephalus, a DeWitt-based support group, to advocate for hydrocephalus research.

    Hydrocephalus is a medical condition caused when an excess of fluid causes swelling and pressure on the brain. It has no known cure, and the only treatment is a shunt implant. A shunt is a soft silicone implant placed in the brain, then directed under the skin to the abdomen where excess fluid is drained and re-absorbed into the body.

    Elyse received her seventh shunt after a seizure Friday evening.

    “I was saying good night to my son, and as I passed her room I saw her hand shaking. I knew she was having a seizure, and we drove to Upstate University Hosptal (in Syracuse). We stayed there until Sunday afternoon,” Elyse’s father, Tom, said.

    Elyse suffered the seizure at 10:30 that evening, and she underwent surgery 8:25 a.m. Saturday morning. After doctors confirmed the shunt was not infected and that Elyse was healthy she was released and sent home.

    “The doctors ran some tests to be sure she is eating and drinking, that her eyes are clear and she is walking and using the bathroom,” Tom Clough said. “Because of the number of sick people in a hospital the risk of infection is lower at our home.”

    On Friday morning Tyler Side, 11, of Washington state, will join her to represent boys battling hydrocephalus. They will then make a number of public and social media appearances during September, which PHF has designated as National Hydrocephalus Awareness Month.

    But first she will enjoy some time visiting Washington and Virginia Beach.

    “I am ready to stand before the people in suits and talk,” Elyse said. “Then I will go to the beach with my pail and shovel and play.”

    Request for help

    Elyse and other members of the delegation will stand before the country’s legislative branch to help advocate for continued education and research for her condition. Their goal is to have Bill H.R. 2313 passed into law.

    If passed the Public Health Services Act would require the Centers for Disease Control and Prevention to expand its tracking of the epidemiology — the patterns, causes and effects — of hydrocephalus and use the information as part of a national database to spur research on the condition.

    “We hope to accomplish more than we did last year,” Elyse’s mother, Kim Clough, said. “We’ve had good success with (U.S. Senator Charles) Schumer’s office, but we need to get this passed in the House of Representatives first before the Senate will consider it. We met with a representative’s staffer and all he did was stare at his pen and ignore what we said.”

    An ongoing battle

    PHF, which has chapters in 30 states, provides supports to families and also advocates with the medical and legal communities to help find a cure. Since 2010 they have given $375,000 in grants and donations towards research and education on the condition.

    Research is needed because the relief provided by shunts is compromised by their frequent failure rate. Children have a shunt failure rate between 25 and 40 percent. Replacing a shunt is a complicated and potentially dangerous process. Elyse most recently had a shunt replaced in February.

    “There are 40,000 shunt replacements a year, one every 15 minutes,” Tom Clough said.

    Endoscopic third ventriculostomy, a shunt-free procedure where an incision at the bottom of enlarged ventricles allows fluid to drain, only works in two-thirds of patients.

    Despite its myriad disorders hydrocephalus has a high survival rate. Several of the estimated 125,000 people suffering from have reached middle-age and older. “Some of these people will be coming with us this week,” Tom Clough said.

    The Clough family remains proactive in supporting Elyse. Older brother Nathan supports his sister in school, and saves his allowance to help fund a cure. Tom Clough has organized the second fun run to raise money for Elyse. Information on the run and REACH’s mission may be found at www.reachorg.org

    Hydrocephalus has over 180 different causes. They include birth defects, traumatic brain injury, infection, and overproduction or under-absorption of brain fluid. Symptoms include headaches, nausea and vomiting and sensitivity to light and flu-like pains. Elyse developed hydrocephalus after she was born premature, at 24 weeks.

    Along with the risk of seizure, Elyse takes medication for her underdeveloped lungs (caused by her premature birth) and undergoes physical therapy, occupational therapy and speech therapy. She has trouble feeding herself anything besides finger foods. And she’s endured six shunt operations.

    “This child could take up all of our time, but it is what it is,” Kim Clough said. “We know there has to be a better solution. If we can get political help then we will be closer to that solution.”

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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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