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.

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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.

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NEW EDUCATIONAL AND RESEARCH INTERNSHIP SCHOLARSHIP OPPORTUNITIES LAUNCHED AT THE PEDIATRIC HYDROCEPHALUS FOUNDATION

Fairfield, CT – The Pediatric Hydrocephalus Foundation, the largest Pediatric focused Hydrocephalus advocacy and research funding provider in the United States, is pleased to announce two new scholarship and grant opportunities beginning in the Summer of 2018.

Through the generosity of the Shanley family and the Connecticut State Chapter of the Pediatric Hydrocephalus Foundation, the Reagan Sloane Shanley Scholarship will offer a $10,000 educational scholarship and a $10,000 research internship grant.

The purpose of these initiatives is to encourage students and researchers in the applied sciences to explore and find practical solutions to help alleviate hydrocephalus, a debilitating brain condition with no known cure; only life-long work arounds with many points of potential failure.

The PHF and the Shanley family believe that there are new, better devices/techniques that can be developed by this next generation of technical minds. Our hope is to encourage students and practitioners to put their considerable talents toward answers that will make the lives better for the over one million people who have Hydrocephalus.

“We are honored to announce these two wonderful opportunities, which reflects the importance of, and our commitment, to research,” says Michael Illions, Vice President & Director of Advocacy at the Pediatric Hydrocephalus Foundation.

“Our daughter Reagan was diagnosed with hydrocephalus at 9 months old. Our brave and feisty little girl has inspired us to be a part of the Pediatric Hydrocephalus Foundation. Over the last 3 years we’ve raised over $200,000 for the PHF through the generous donations of family and friends. Reagan’s two brain surgeries, along with numerous doctor and hospital visits, made us strong believers that there has to be a better way. That’s why we’ve created the Reagan Sloane Shanley Scholarship. We’re committed to putting the funds toward supporting students and researchers in their efforts to find advancements in treating hydrocephalus,” says Cindy Shanley, mother of Reagan, and Connecticut State Chapter Director at the PHF.

About The Reagan Sloane Shanley Scholarship
The scholarship is named in honor of Connecticut resident Reagan Shanley, 5 ½ years old, who was diagnosed with hydrocephalus at 9 months and had two brain surgeries before she turned 18 months. Reagan was treated with an Endoscopic Third Ventriculostomy (ETV) which is an alternative surgical procedure that creates a bypass for the cerebrospinal fluid (CSF) in the head and eliminates the need for a shunt. A shunt, the most common treatment for hydrocephalus, is a silicone tube used to divert CSF. While shunts may be lifesaving, they are permanent mechanical devices and fail for a variety of reasons over the course of a patient’s life. Reagan’s parents Tim and Cindy Shanley (CT State Chapter Directors of the PHF) remain optimistic that Reagan’s condition will continue to be successfully managed with the ETV. However, their experience with Reagan, as well as seeing the struggles that fellow hydrocephalus families have with the 50+ year old shunt treatment, has made them realize that better “work-arounds” are needed. The Shanleys are committed to inspiring the next generation of scientists to find advancements in the treatment of hydrocephalus so that Reagan and all of the other children who suffer from this condition can lead better lives.

Student scholarship – is available to applicants with an interest in the discipline of neuroscience and/or engineering and have an understanding and/or current interest in Hydrocephalus, cerebral spinal fluid and the brain. The maximum funding request per application in 2018 is $10,000 per year, (up to a 3-year commitment with re-approval each year).

Research Internship – requests must be made by the research organization or hospital for a new internship fully dedicated to Hydrocephalus or related brain conditions. The Grant is available to practices/research organizations with a predominant emphasis on neuro-conditions. The maximum funding request per application in 2018 is $10,000 per year, (up to a 3-year commitment with re-approval each year).

About the PHF
The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 30 state chapters, provides support to families, friends and children affected by this incurable brain condition.

PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at State and Federal levels to push for more research and support in the fight against Hydrocephalus.

Since 2010, PHF awarded over $500,000 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for research and education. For information, visit HydrocephalusKids.org.

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.