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.
Derek Carr sends care package to special fan in South Carolina
February 6, 2019 by PHF
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Derek Carr is many things.
He’s a father, a husband, a Pro Bowl quarterback, the franchise’s second-leading career passer, as well as an all-around good dude.
And the well-documented good guy was back in action recently as he made the day of an eight-year-old girl from South Carolina.
Brooklynn Reiter, in addition to being a lifelong fan of the Silver and Black, has an incurable brain condition called hydrocephalus, and as a result she’s had eight brain surgeries in her young life.
The Silver and Black’s starting quarterback found out about Brooklynn and reached out to her, sending her not only a letter, but an autographed picture as well.
To read DC’s letter, and to learn a little bit more about Brooklynn, click here.
This 8-year-old girl has had 8 surgeries. Cheering her on is Raiders QB Derek Carr
February 6, 2019 by PHF
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Brooklynn Reiter keeps overcoming any obstacle that is thrown her way – especially eight brain surgeries.
She gets strength from football.
The 8-year-old from the Myrtle Beach, S.C., area is often sitting next to her dad, John, watching their beloved Oakland Raiders.
She especially has her eyes on her favorite Raiders player: Derek Carr.
Decked out with her Raiders apparel and pom-poms, Brooklynn cheers on Carr and the Raiders when they play.
Carr returned the favor last week, sending her a letter and an autographed picture wishing her well.
“Now you are my #1 HERO!” Carr wrote.
“I was about to scream because he actually signed it and I liked it,” Brooklynn said in a telephone interview. “I jumped up and down.”
Her dad is a lifelong Raiders fan. She became a Raiders fan at an early age and had a Darren McFadden jersey, just like her dad.
“She got to a point when someone would get ready to hike the ball or coming out of the huddle, her feet would start kicking.,” he said. “When she got older, she would watch the game with me more and more. One day she looked at me and said, ‘I love the Raiders, too.’ It just took off from there.”
She pays close attention when Carr gets sacked – she doesn’t want him to get hurt, and especially worries about head injuries.
Brooklynn worries because she has an incurable brain condition called hydrocephalus, a buildup of cerebral fluid that can put pressure on the brain. She has a shunt to drain the fluid, but when it fails, she needs surgery, the latest before Thanksgiving.
“I’m always scared,” she said of her concern for Carr, “if he gets admitted to the hospital or broke a part of his body.”
Carr aimed to calm her fears in his letter.
“Don’t you worry about me,” Carr wrote. “When I get hit, it is usually not that hard.” (Carr put in a smiley face at the end.)
Brooklynn was one of two selected as the 2019 National Ambassador of Hydrocephalus Awareness for the Pediatric Hydrocephalus Foundation. Brooklynn and her family will be going to Washington, D.C., in August to meet with two senators and a congressman.
Carr wished Brooklynn well on her trip to Washington and concluded, “Keep fighting the fight and know that #4 is your biggest fan!”