5th annual “Walk to Beat Hydrocephalus” held Saturday in Easthampton
September 29, 2019 by PHF
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EASTHAMPTON, Mass. (WWLP) – 21-year-old Westhampton resident Isabella Sacharcyzk has been struggling with the rare brain condition, Hydrocephalus, her entire life.
“Hydro” is a condition in which fluid accumulates in the brain, and sometimes causes brain damage. Isabella has had 22 brain surgeries. Hydro has affected her ability to walk and learn.
“I struggle with headaches everyday,” said Isabella Sacharczyk. “My ability to walk has gone up and down, I now wear leg braces.”
Isabella is the Director of the Massachusetts Chapter for the Pediatric Hydrocephalus Foundation. Her organization held the Walk and 5K Saturday outside the Mary Ann’s Dance Studio on Main Street.
This was the fifth “walk to beat hydrocephalus” in Easthampon and the main goal was to raise awareness and money to find better treatment and hopefully a cure.
“We look around we don’t know who is affected,” Michelle Walden of Deerfield. “There needs to be more awareness, more funding.”
“Last night I couldn’t sleep, just because I was so excited and I love seeing the community come together helping to create a common goal to eventually finding a cure to hydrocephalus, said Sacharczyk.”
All of the money raised will help fund hydrocephalus research at the Boston Children’s Hospital. More than 15 thousand dollars was raised at last year’s walk and 5K.
Quinnipiac student awarded scholarship named for Fairfield girl with incurable brain condition
June 20, 2019 by PHF
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FAIRFIELD — A Quinnipiac University student recently received a $30,000 scholarship named in honor of a Fairfield 6-year-old with an incurable brain condition, according to a news release.
The Pediatric Hydrocephalus Foundation, the largest pediatric-focused hydrocephalus advocacy and research funding provider in the country, announced on Monday that Ashley Dunbar, of Quinnipiac’s Frank H. Netter MD School of Medicine, was the first recipient of the Reagan Sloane Shanley Scholarship.
The scholarship is named for 6-year-old Fairfield resident Reagan Shanley. At 9-months-old, she was diagnosed with hydrocephalus and had two brain surgeries before she reached 18 months.
“Our brave and feisty little girl has inspired us to be a part of the Pediatric Hydrocephalus Foundation,” said a prepared statement from Cindy Shanley, mother of Reagan. Over the last 4 years we’ve raised almost $300,000 for the PHF through the generous donations of family and friends.”
Cindy Shanley said her family decided to created the scholarship in his daughter’s name as an effort to support students and researchers working to find advancements in treated hydrocephalus.
The scholarship Dunbar was awarded will be spread out over three years. She received three $10,000 checks to be used each year. The family said she was “the obvious choice” for the scholarship.
Dunbar was playing against the Yale University’s women’s ice hockey team in a game in the fall of 2013 when she was hit hard from behind and suffered a serious head injury, bringing her hockey career to an end, the news release said.
After her injury, Dunbar created a concussion support group at Quinnipiac and decided to focus on neurological research to understand how the body and brain function, and help support the fight against hydrocephalus.
“Reagan is truly a vivacious individual,” Dunbar said in a prepared statement. “Thank you again to the Shanley family and to the Pediatric Hydrocephalus Foundation for their support and I am honored to have been named a Reagan Sloane Shanley Scholarship recipient.”
Reagan’s parents, Tim and Cindy Shanley, are the Connecticut State Chapter Directors of the Pediatric Hydrocephalus Foundation. They said the continue to remain optimistic that their daughter’s condition will continue to be managed through her current health procedures.
Pediatric Hydrocephalus Foundation is an all-volunteer nonprofit organization intended to educate the community by raising awareness about hydrocephalus. The organization has 30 state chapters and provides support to families, friends and children affected by the incurable brain condition.
Parents Of Fairfield Girl With Incurable Brain Condition Award $30K Scholarship To Med Student
June 20, 2019 by PHF
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A medical student in Connecticut was awarded a scholarship funded with monies raised by family and friends of a six-year-old Fairfield girl with an incurable brain condition.
The student is Ashley Dunbar at the Frank H. Netter MD School of Medicine at Quinnipiac University.
The Reagan Sloane Shanley Scholarship is named for Reagan Shanley who was diagnosed with hydrocephalus at 9 months and had two brain surgeries before she turned 18 months.
She was treated with an alternative surgery called Endoscopic Third Ventriculostomy to create a bypass for the cerebrospinal fluid in the head and eliminate the need for a surgically implanted medical device called shunt in her brain.
“Our brave and feisty little girl has inspired us to be a part of the Pediatric Hydrocephalus Foundation. Over the last 4 years, we’ve raised almost $300,000 for the PHF through the generous donations of family and friends,” said Cindy Shanley, Reagan’s mother, and the foundation’s Connecticut State Chapter director.
“We’re committed to putting the funds toward supporting students and researchers in their efforts to find advancements in treating hydrocephalus,” said Shanley.
The recipient Ashley Dunbar, in 2013, was injured in a game for the Yale University women’s ice hockey team and suffered a serious head injury, ending her hockey career. Dunbar, of Hillsborough, New Jersey, graduated from the Lawrenceville School.
At college, she started a support group and did neurological research to understand how the body and brain function in order to help support in the fight against hydrocephalus.
She has received the first $10,000 installment of the three-year scholarship.
Eight-year-old with eight surgeries behind her becomes national ambassador
April 11, 2019 by PHF
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An 8-year-old Myrtle Beach girl born with extra fluid in and around her brain is showing she got an extra dose of something else, too: enthusiasm.
“I have to raise awareness about hydrocephalus, which I have,” says Brooklynn Reiter.
The second grader whose parents once feared she’d never walk is now not only a cheerleader who loves art, reading and science classes at Forestbrook Elementary School but also a national ambassador for the Pediatric Hydrocephalus Foundation.
“She’s always happy,” says Brooklynn’s mother, Kristen Reiter. “She has a great imagination.”
This summer, the Reiters will travel to Washington, D.C., where Brooklynn will speak with members of Congress about hydrocephalus. “You have to warn people about something they might not know about,” Brooklynn says.
About one in 1,000 babies is born with hydrocephalus. There’s no cure, and surgery is the only effective treatment. Brooklynn has had eight operations, starting when she was just 3 days old.
Her mother remembers the moment she found out about Brooklynn’s condition. She was about 20 weeks pregnant and had just had an ultrasound, which is a scan that shows how the fetus is doing.
“I knew something was wrong. They said, ‘Hold on. The doctor needs to talk to you.’ Everything the doctor said to me went in one ear and out the other. I knew whatever she was saying wasn’t good, so I blocked it out.”
Reiter’s doctor sent her to MUSC Health in Charleston, which has doctors and nurses who specialize in taking care of mothers and babies during and after complicated pregnancies. That includes neurosurgeon Libby Infinger.
“This is obviously very frightening for the parents,” Infinger says. “We meet with them early so they can get to know the team that will be caring for the baby. We have such good treatment for hydrocephalus these days. Prompt evaluation and intervention let kids grow up and lead very active and productive lives.”
The Reiters also connected with other families with children who have hydrocephalus. “We heard their stories about their children and what they’ve been through. It’s not all that bad.”
Brooklynn spent her first days of life in the Neonatal Intensive Care Unit at MUSC Children’s Health and returned for surgery several times over the next couple of years. Doctors put in a shunt, a tube that draws fluid off the brain and sends it to the stomach. She also had to have surgery on her eyes, her mother says. “There was so much pressure from the fluid buildup when she was little that it hurt the nerves behind her eyes.”
Hydrocephalus also had an effect on Brooklynn’s development. “When she was little, she had some issues,” her mom says. “She had to have physical therapy and occupational therapy. She didn’t walk till she was over 2 years old. That was kind of a scary time.”
But Brooklynn has gone on to show just how well a person with hydrocephalus can do. While she still needs to visit MUSC Children’s Health once a year to make sure she’s not having any more developmental problems, she’s mostly focused on other things – like movies. “My favorite movie is Wreck-It Ralph 2.”
And like a lot of kids, Brooklynn loves video games. “I usually go play on my Nintendo and my iPad when I get home from school.”
She’s looking forward to her August trip to Washington. “I have to give a speech about hydrocephalus.”
That shouldn’t be any problem for a girl who loves to talk, according to her mother. “I know she’ll do great.”
Infinger agrees. “She’s been through a great deal, but you would never know it by looking at her. Brooklynn is poised, she communicates well, and has great insight to her condition. She’ll do a great job of educating others about hydrocephalus and show our nation’s leaders what a full and meaningful life one can have while living with hydrocephalus when it is recognized early and treated.”
5-year-old Caleb Wiggs to create awareness of hydrocephalus
February 10, 2019 by PHF
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Caleb Wiggs is just like any other five-year-old.
He can be shy around strangers . . . at first.
He loves cheering on his older sisters at basketball games, observing that his mother “is pretty loud.”
And one can’t help but feel Caleb’s joy when he shares a grin.
In fact, Caleb will be sharing that smile – and his story – with millions of people as one of two children who have been selected as this year’s national ambassadors for Hydrocephalus Awareness for Incurable Brain Condition.