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.”
“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
The HydroWarrior Joins the PHF!
Ashley Fisher, author of HydroWarrior: A parent and child story living hydrocephalus from diagnosis to treatment, and Mom to Hydro Hero Bailey, has joined and will be partnering with the Pediatric Hydrocephalus Foundation, (PHF), as a National Spokeswoman.
With an expected book launch in the 4th Quarter of this year, Ashley will be promoting her book, raising awareness and fundraising all over the Country.
“We are thrilled to have this Hydro Warrior joining with the Pediatric Hydrocephalus Foundation and our community of Hydro Heroes!”, said PHF President Kim Illions.
Ashley will also be the Keynote Speaker in Washington DC at this year’s PHF National Hydrocephalus Awareness Day & Conference on Capitol Hill on August 19th.
“It is such an honor to join the PHF family! I feel that our partnership is a perfect fit. All book proceeds of HydroWarrior will be donated to the Pediatric Hydrocephalus Foundation. Their consistent dedication to funding a cure for hydrocephalus has made the decision that much easier!”
About Ashley Fisher
Ashley Fisher, a sales executive for a Berkshire Hathaway company and two year old daughter, Bailey, currently reside in Castle Rock, Colorado. Bailey was diagnosed with severe Congenital Hydrocephalus during her 24 week prenatal scan and has endured 6 surgeries with two of them being craniofacial repair surgeries. Through many trials and tribulations, Ashley decided to take a stand and join other hydrocephalus advocates in hope to raise awareness and find a cure.
Her first strategy was to bring more awareness around the condition by writing and publishing HydroWarrior along with neurosurgeon, Dr. Charles C. Wilkinson. Although it has not been released yet, HydroWarrior’s book campaign is currently carrying a strong audience through social media in India, Somalia and the Philippines, Ashley hopes to one-day take her advocacy across the world and raise research funding in well needed countries.
About the Book
HydroWarrior dives into an informative perspective as a parent (Ashley Fisher) of a child (Bailey) with Hydrocephalus. Hydrocephalus, commonly referred to as “water on the brain:, can be a life-threatening condition that affects one in a thousand babies in the U.S.
The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.
The PHF will raise money for and work with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus.
The PHF, Inc. is a non-profit 501 (c) (3) charitable organization, made up of volunteers.
Additionally, the PHF will advocate on behalf of the members of the Hydrocephalus community and work with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus.
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.