“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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I spent time with 6th year old Elyse Clough and her family to see how hydrocephalus impacts their family. Elyse has had 6 brain surgeries since birth, tonight you hear Elyse’s story.

“She was only 24 weeks along when she was born. She weighted a pound and seven ounces. Two weeks after she was born we found out that she had a massive brain bleed and so she essentially had a stroke. And as a result of that, that was how she developed hydrocephalus,” said mom Kim Clough.

Having an incurable brain condition isn’t stopping Elyse from having the time of her life. She enjoys playing games with her big brother and has big plans for the future.

“And this is lamby, yea, a doctor,” Elyse Clough said.

Sometimes though Elyse can’t have fun like every other little kid. Sometimes her shunt, that keeps her alive, shuts down and overflows with fluid…sending Elsye to the hospital for emergency surgery and leaving the family at a standstill.

“Quiet, boring, lonely,” Nathan Clough said.

“She knows that when she has a seizure that she needs to go to the hospital. She knows that when she’s in the hospital she’s going to need surgery and have an incision and she knows after surgery she won’t be able to go to school or see her friends or her cousins for a long time until she heals,” Tom Clough said.

Seeing what Elyse goes through on a daily basis, mom Kim and dad Tom along with other families and supporters created the reach organization. Research, educate and cure hydrocephalus. This gained national attention from the pediatric hydrocephalus foundation to send Elyse to Capitol Hill on August 19th for National Hydrocephalus Awareness Day.

“Are you excited for DC? Yea. What are you going to do down there? You’re the spokesperson for hydrocephalus. Oh, yeah,” said Elyse and brother Nathan.

Elyse was a little camera shy, but her family is very excited for the trip that Elyse is the spokesperson for and to one day find a cure. But, until then they hope to gain support in Washington to create a spinal fluid bank database. For more information head on Elyse and the condition head to www.hydrocephaluskids.org.

Tonight I’m taking you into the life of 6 year old Elyse Clough who’s fighting an incurable brain condition.

Behind Elyse’s smile and long hair are stitches and scars from six brain surgeries. But it doesn’t stop her from being like every other little girl. She loves playing with her big brother Nathan. But some days she can’t play, because she’s sick and her shunt has failed…sending her to get emergency brain surgery.

Her family, along with others, created an organization called REaCH–to research, educate and cure hydrocephalus. This August, the family heads to Washington, D.C to gain support in Congress.

“We try to make money, raise awareness, have a support system for people that have children with Hydrocephalus, we have adults in the group that have Hydrocephalus so it’s been a really good outlet for us to be able to kind of streamline something that’s really bad and make it into something positive and something that has helped a lot of other people,” Kim Clough said.

Tonight at 10 on WFXv and 11 here on WUTR the Clough family shares their in-depth story on Hydrocephalus and Elyse shares her excitement for being a national ambassador.

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Tyler Side is a cheerful, social boy, who smiles often, but the 11-year-old’s scars reveal a childhood studded with struggle.

Tyler has hydrocephalus, an incurable brain condition characterized by excessive cerebrospinal fluid in the brain’s ventricles, which puts harmful pressure on the tissues of his brain. The scars are from the 16 life-saving surgeries the boy has endured due to the condition.

Now, the Colbert boy will use his story to help others with hydrocephalus. The Pediatric Hydrocephalus Foundation recently selected him as one of two 2016 national ambassadors for pediatric hydrocephalus awareness.

“I feel excited,” he said. “I hope that the hydrocephalus foundation can find a cure for it.”

Tyler will be featured in advertising campaigns and promotional materials heading into the eighth annual National Hydrocephalus Awareness Month in September. He and his family also will travel to Washington, D.C., for National Hydrocephalus Awareness Day on Capitol Hill in August.

So many uncertainties

Tyler was born at just 28 weeks gestation at Ramstein Air Base in Germany, where the Sides were stationed. The pregnancy had been healthy and normal, but placental abruption led to an emergency cesarean section and Tyler was born 11 weeks early, weighing a mere 2 pounds 12 ounces. He was rushed to the neonatal intensive care unit and hooked up to a ventilator.

For many days, doctors didn’t know if he would live. Imaging detected bleeding in his brain.

“It was scary,” said his mother, Crystal Side. “It was very traumatic.”

Despite the news, Side and her husband, Chris, remained hopeful that their baby would pull through, but they were uncertain what that would mean in the long run.

When there was no sign of increased bleeding, the family celebrated, although they learned Tyler might never walk or talk because of the damage.

At 20 days old, doctors diagnosed Tyler with post-hemorrhagic hydrocephalus. The family was flown back to the U.S. by a military medical evacuation flight, still wondering what the diagnosis meant for their family and new baby.

“Would he be able to do the things other kids do? Would he be able to lead a full and productive life? There were just so many uncertainties,” Side said. “It was really difficult as a first-time parent.”

Tyler would go on to have numerous surgeries in his first 10 weeks of life, including a bowel resection following a diagnosis of necrotizing enterocolitis, and the family endured many days in the NICU, hoping Tyler’s progress wouldn’t be set back by more surgeries or infections.

Although he is walking and talking today, Tyler is unable to do many of the physical activities kids his age do because of the condition and the risk of injury. He and his family were ecstatic to learn he was selected to represent the cause – an activity they could give a resounding “yes” to. Side said she hopes her son will see that there are other children like him.

“Having him be able to connect with them will be really special,” she said.

More awareness needed

The causes of hydrocephalus are still not well understood. More awareness is needed, as well as better federal funding for research, said Michael Illinois, vice president and national director of advocacy for the Pediatric Hydrocephalus Foundation.

“Our goal is to provide funding to find better treatment options or help modify or update the current treatment options, while having an eye on one day finding a cure,” he said.

To treat hydrocephalus, a neurosurgeon typically places a shunt system in the body to redirect excessive fluid to other parts of the body, where it is reabsorbed.

Shunts are imperfect systems, and complications – mechanical failure, infections, obstructions, or the need to lengthen or replace the catheter – can result in more surgery, according to the National Institute of Brain Disorders and Stroke.

The condition can be congenital or acquired. Symptoms vary depending on factors such as age and disease progression. In infants, a rapidly increasing skull size is a sign of hydrocephalus, as well as vomiting, sleepiness, irritability and seizures.

The disorder occurs in up to 1 in 500 births and affects 1 million Americans.

Untreated, hydrocephalus can be fatal, and despite medical advances, many with the condition remain unable to lead full and productive lives, according to the foundation.

The all-volunteer nonprofit foundation 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.

It has 30 state chapters, including in Washington. Since 2010, it has awarded $375,000 in grants and donations to hospital and research centers around the nation.

‘It’s been a long journey’

Despite the challenges he has faced, Tyler has “such a great personality,” his mother said.

“Tyler is such a happy kid and always so pleasant,” she said. “All of his friends, teachers, everyone just loves him.”

She said, “it’s just amazing how well he’s doing.”

“He’s done great,” she said. “It’s been a long journey on some things. To look at him today, most people would never know that he’s been through what he has.”

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TOWN OF VERNON — The battle against the brain condition hydrocephalus has found a champion in six-year-old Westmoreland elementary school student Elyse Clough.

Like her namesake (Clough is based on an old Irish word, an Chloch, which means ‘the stone’), Elyse has been a rock for her family through her efforts to live a full life despite her disability.

Her bravery, and her parents’ commitment to help her and others overcome legal and medical barriers to fighting the condition, have led to her being named National Ambassador of Hydrocephalus Awareness for 2016 by the Pediatric Hydrocephalus Foundation (PHF).

“We had formed the group, REaCH, (Research, Educate, and Cure Hydrocephalus) to provide support for those suffering from hydrocephalus and their families and had been in contact with PHF,” Elyse’s mother, Kim, said. “They knew about us and thought Elyse was a good match.”

Later this year Elyse will make a number of appearances on social media and will speak before the U.S. Congress and House of Representatives in Washington, DC on August 19.

Elyse will join her parents and 23 other members of REaCH. Her counterpart, Tyler Side, 11, of Washington State, whom PHF has chosen to represent boys battling hydrocephalus, will join her there. They will stand before the country’s legislative branch to help advocate for continued education and research for her condition.

“It’s been a big deal to her to be chosen,” Kim Clough said.

Her work will continue into September, which PHF has designated as National hydrocephalus Awareness Month for the eighth year.

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 awarded $375,000 in grants and donations towards research and education on the condition.

Hydrocephalus (a combination of the Greek words hydro, or ‘water,’ and kephalos, or ‘head’) is a condition in which an abnormal amount of cerebrospinal fluid accumulates in the brain’s ventricles. The excess fluid causes swelling on the brain.

The ventricles are inter-connected spaces in the brain that produce cerebrospinal fluid; the fluid cushions the brain, helps prevent infection and eases blood flow in the brain.

“The problem is that the fluid will not drain, and there is increased swelling in the brain and other issues,” Elyse’s father, Tom, said.

Hydrocephalus has over 180 different causes. They include birth defects, traumatic brain injury, infection, and overproduction or under absorption of brain fluid. Elyse’s began when she was born premature, at 24 weeks.

“She can be fine one minute and then start having a seizure, and she’s in an ambulance,” Kim Clough said. “Life can change in a minute.”

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.

Hydrocephalus has no known cure, and the only universally reliable treatment is a shunt implant. (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). A shunt is a soft silicone implant placed in the ventricle, then tunneled under the skin to the abdomen where excess fluid is drained and re-absorbed into the body.

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.

“Every time Elyse, or anyone, has a shunt replaced they require a battery of tests,” Tom Clough said. “They include a CTE scan and several x-rays. Elyse is forced to absorb more radiation than she should have to.”

CTE stands for chronic traumatic encephalopathy, the brain condition recently brought into national attention because of its prevalence among former professional football players.

Elyse is also beginning to deal with the emotional impact of her condition.

“She is becoming more aware of what is happening with her, and she gets nervous sometimes,” Tom Clough said.

Elyse’s state of mind is helped by the presence of her eight-year-old brother, Nathan, who proudly wears a PHF pin on his backpack.

“I’m a sound sleeper, and I missed the ambulance the last time Elyse had a shunt put in (on Feb. 10),” he said. “I stayed with my grandmother the next day, and after I went to school I kept wanting to leave school and check on my sister.”

Nathan’s constant interaction with Elyse has helped her improve her daily living skills.

“She’s very reliant on her brother,” Kim Clough said.

Kim and Tom have joined Elyse in her fight. They formed REaCH in 2010; Kim serves as president and Tom is the group’s treasurer. The group meets once a month at the library in the town of DeWitt near Syracuse.

“It’s important to have the support of those enduring the same challenges that you’re going through,” Kim Clough said.

The Cloughs’ burden is eased by their flexible work schedule. Kim is part-owner of Colonial Pharmacy in Whitestown, where Tom works as an accountant.

“We are able to work around her needs, which is good because she always needs someone with her,” Kim Clough said. “She always comes first.”

Those suffering from hydrocephalus and their families may take solace that the condition, like juvenile diabetes, is not necessarily fatal if properly treated.

“We have all sorts of people of all ages at our meetings,” Kim Clough said. “They won’t let hydrocephalus stop them from living their lives.”

Count Elyse among them. Despite her pain she is planning on living a fulfilling life.

“They asked me in school what I wanted to be when I grow up, and I told them I wanted to be a pediatrician,” she said.

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