Jake Barger shakes his brown hair in front of his eyes at the Eaton Public Library as he talks about his favorite book series this week. It’s a tie between Magic Tree House and The Boxcar Children. He decides right then to write a crossover novel. The 8-year-old wants to be a judge, a doctor and at this moment, he’s decided to be a writer, too.

Jake’s mom, Annie Barger, watches proudly as her son chatters away about his plans. By now, he’s planning to bring The Avengers into his book. There might even be a movie deal, so he’s added director to his future resume. At this point, Annie’s eyes begin to tear up. Years ago, she didn’t know if Jake would have much of a future.

Annie was seven months pregnant with Jake when an ultrasound showed hydrocephalus in his developing brain. Hydrocephalus, or simply, fluid on the brain, is a birth defect, affecting one or two babies out of every thousand, according to the National Institute of Neurological Disorders and Stroke. There are multiple kinds of hydrocephalus, but in Jake’s case, one of the pathways in his brain where the natural fluid can drain is too narrow, causing it to build up. The Hydrocephalus Association estimates more than a million Americans live with the disorder. It’s the most common reason for brain surgery in children, according to the association. Jake’s first surgery, after all, came when he was 21 days old.

Jake was delivered via caesarean section at the University of Colorado Hospital in Aurora. The doctors told Annie and her husband, Paul, if he survived the delivery, he would be severely disabled all his life. After he was born, doctors told Paul they couldn’t believe they were looking at the same baby they’d been observing in utero. He was too responsive and energetic. Jake’s been surprising people ever since.

As well as Jake does, the defect still is a constant struggle. That’s why Annie started the northern Colorado chapter of the Pediatric Hydrocephalus Foundation. She’s in the process of organizing a fundraiser she hopes will take place by spring. The foundation raises money for hydrocephalus research and provides resources for those suffering from it, as well as education.

Annie’s main goal is to teach people what hydrocephalus is and how to properly handle emergency situations with people like her child.

“Being very vigilant and very proactive in advocating for your children is something that I do, maybe more than I need to, but it’s gotten us really far,” she said. “He’s the reason that we breathe.”

Jake’s had five surgeries. He has a shunt connecting the narrowing in his brain down to his stomach so the fluid can drain. The medical bills are endless, and so are the worries for Paul and Annie. They have to be hyper-vigilant. A headache or nausea could mean a shunt malfunction for Jake. If he complains of pain, or if he’s having trouble finishing his meals, Paul and Annie have a three-day rule — for the three days following the incident, Jake has to take it easy.

For Jake, a bad respiratory infection could cause an infection along the tube, which could be life threatening. Though he hasn’t had a seizure in years, another could always come. Even on a peaceful, happy morning, Annie fears what the afternoon might hold.

Another problem arises every time Jake steps out the door. Despite the commonness of hydrocephalus, not many know what it is or how to handle the disorder. Annie said she fights an uphill battle of education.

For example, once after a trip to the emergency room via an ambulance, a doctor insisted Jake showed symptoms of meningitis and wanted to give the boy a spinal tap. Because Jake’s fluid drainage is regulated by his shunt, a quick shift like that caused by a spinal tap could give him a stroke, Annie said. The doctor wouldn’t listen to her refusals and threatened to call child services if she wouldn’t let him get the procedure.

In school, Jake’s first-grade teacher exacerbated the behavioral issues that come with his disorder by refusing to listen to the medical reasoning or work with him on ways to improve. The hydrocephalus causes Jake to be a very linear thinker. He follows rules and does things as he is told. If he is told to use a blue marker to color a page one day, but then the next, he is told he can’t use that marker, he can get frustrated.

Some teachers were very understanding, though. Jake’s second grade teacher, Jen Delich, worked extensively with Jake to accommodate his needs and help him learn. Annie said she was incredible with him.

As Jake carried a big stack of Magic Tree House books to the front of the Eaton Public Library, Annie lagged behind, smiling as her boy struggled to balance the unwieldy load. He has no depth perception, but has learned to compensate for it, so it’s hardly noticeable. When he’s excited, he spins around in little circles, which he thankfully waited to do until the books were safely on the checkout counter. After the librarian scanned the barcodes and handed the heap back to Jake, he heaved them back into his little arms and hurried over to Annie to put them in the book bag.

“I’m training for American Ninja Warrior,” he said, flexing his little boy muscles.

Add it to the job list.

Editor’s note: This story has been edited from its original version to reflect the grade of one of Jake’s teachers.

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KHQ.COM – Have you head of Hydrocephalus? If you haven’t, it’s not because it’s uncommon. It’s actually more common than down syndrome and 30 times more common than cystic fibrosis. Hydrocephalus just doesn’t get the same attention in the media or as much public funding as other conditions. Hydrocephalus affects 1 in every 500 newborns and it’s the number one reason infants and children have to have brain surgery.

Hydrocephalus is caused when too much cerebrospinal fluid builds up in the brain. Normally, this fluid cushions the brain but if you have too much, it puts harmful pressure on the brain.

For more information on hydrocephalus, click here: http://www.hydrocephaluskids.org/wordpress/?page_id=8

Kandice Curtis knew something was wrong with her son Wes one morning in July 2014. Wes was diagnosed with hydrocephalus and underwent emergency brain surgery. Kandice has since made it her mission to educate herself as much as possible. She has become the director for the Washington chapter of the Pediatric Hydrocephalus Foundation and hopes to be able to help other parents of children with hydrocephalus feel encouraged, empowered and understood as they all watch over their hydro heroes.

“On the morning of July 16, 2014, Wes woke with a 103.2° fever, very lethargic and unsteady on his feet. I immediately took him into his pediatrician. His pediatrician almost sent us home with an antibiotic until he saw Wes lose his balance when walking to the door. This concerned him and he admitted Wes to the hospital to be observed and get blood work done. His white blood cell count was way high and a few other levels were off. Because of the fever and balance issues, they ordered a CT scan. The scans showed a lot of excess fluid in Wes’ brain.

– Kandice Curtis

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In many ways, Samantha Frame is your typical eight-year-old girl in the third grade.

She loves animals, especially her dog, Lola, and white tigers like her stuffed animal Harmu.

She loves Taylor Swift, and you could probably guess her favorite school activity. (Recess!)

But, Samantha is different than many other kids her age.

She lives with Hydrocephalus.

“It’s an extra accumulation of cerebral spinal fluid,” said Randi Conley, Samantha’s mother. “Essentially, it’s a Greek word for ‘water on the brain’ is what it is, and they have too much fluid and not enough space.”

Samantha has undergone nine surgeries since her diagnoses when she was only 10-and-a-half months old.

She also has a shunt installed which drains the excess fluid away from her brain.

Even though she hasn’t had a surgery since January 2014, nearly two years, Samantha deals with many challenges everyday.

“The average child gets the flu. The average child gets strep throat. But, the first symptom of those things are headaches,” Conley said. “So, Samantha, a lot of the symptoms of a regular childhood illness that most people just go ‘hmm…ok,’ those are also symptoms of a shunt failure. So, a lot of times in the fall and in the winter time, she ends up in the emergency room.”

September is Hydrocephalus Awareness Month.

Samantha’s mother, like many other parents who have a child with the rare disease, just want to find a cure.

“My little girl has headaches. She’s had nine brain surgeries. She’s eight-years-old,” Conley said. “That shouldn’t happen. We’ve got to find a way to fix this so that no other mom has to watch her kid do this, and no other child has to go through this. It’s time. We need a cure.”

Conley says her daughter, like many others battling this condition, is a fighter.

Samantha looks up to UFC fighter, Ronda Rousey.

“I love the fact that my little girl has a strong, beautiful, intelligent woman that is not going to take anything from anybody, to look up to,” Conley said. “Some of the things have to be filtered, but overall, she can look at her and she’ll say, ‘I’m going to beat this like Ronda Rousey is.'”

As for Samantha…

5 News Reporter Andrew Havranek: What would you like to say to other kids who might be going through some of the same things you go through on a daily basis?

Samantha: I hope they feel better.

To learn more about hydrocephalus and more on how to donate for a cure, click here.

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Everyday is a “ticking time bomb” for parents whose children suffer from a not very well-known medical condition that at any moment can strike.

On Sunday, about 40 people participated in the second annual Pediatric Hydrocephalus Foundation Family 5K to do just that: raise awareness about the devastating illness.

It’s called hydrocephalus, and it occurs when natural passageways that drain fluid from the brain fail. As a result, an excessive amount of fluid builds up in the brain, causing seizures, learning disabilities, restricted movement and the loss of memory. Because the condition affects the brain, the symptoms are incredibly wide and varied, and oftentimes severely damaging.

Not much is known about what causes the condition, and the only current treatment is to surgically insert a shunt system, which is basically a tube that diverts fluid to parts of the body where it can be naturally absorbed. Tubes last only five years and must be replaced for a child to survive.

For the parents who organized the race at the Three Springs Plaza, hydrocephalus is a constant anxiety, living one moment to the next not knowing whether their child will suffer a stroke or have a tube fail, which requires an emergency airlift to a hospital.

“You see him running around today, but tomorrow something could happen, and he could be in surgery,” said Christina Brown, an organizer of the event whose 5-year old son, Jaden, has hydrocephalus. “It’s kind of like a ticking time bomb.”

Brown said she’s spent countless hours in the hospital, many times having to travel to Denver to get her son the treatment he needs to survive. When Jaden was born, doctors told Brown her son would never be able to walk or talk.

At Sunday’s event, Jaden was doing both those things, dancing to the songs of singer-songwriter Melanie Melbourne. It was one of the good days, Brown said, spent outside rather than in a doctor’s waiting room.

Lindsey Oliver, a single mother, said she has friends and family who help with her 5-year old daughter Natalie’s care, but the unnerving threat of an episode always keeps her on edge.

Natalie had a seizure when she was 2½ months old, and spent the first three months of her life in the hospital. Since then, she has had 12 operations and has been airlifted three times. She also suffers from epilepsy.

“It’s such a tiring thing, never knowing when something might happen,” Oliver said. “That’s why it’s such a big moment to see her and the kids interact so well. It really touches your heart. These kids battle everyday.”

Research and awareness about hydrocephalus are still developing, and groups like the Pediatric Hydrocephalus Foundation are on the forefront of advocacy. Officials there estimate the medical condition occurs in 1 out of every 500 births.

You can be born with hydrocephalus or acquire it later in life. Adults have also been known to suffer from the lifelong condition, and an average of 40,000 shunt operations are performed annually.

Brown said Sunday’s race raised about $4,000 to go toward the Pediatric Hydrocephalus Foundation.

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ZenRide Spinning Studio, 869 Post Road, Fairfield hosts the first annual “Biker-Barre + Bubbly” event on Sunday, Sept. 13, at 4 p.m., to raise awareness for the incurable pediatric brain condition called Hydrocephalus.

Bar Method of Fairfield is co-sponsoring the event.

Participants will sweat, sculpt and stretch, then enjoy some bubbly and bites while bidding on silent auction items.

All proceeds will go directly to The Pediatric Hydrocephalus Foundation (PHF).

Fairfield resident Cindy Shanley, one of the spin teacher’s at Zen Ride, has a 2-year-old daughter, Reagan Rae Rae” Shanley, who has hydrocephalus. Cindy organized the fund-raiser.

Cost is a $40 donations to reserve a bike. Additional donations greatly appreciated.

To register, visit zen-ride.com/reserve. To donate, visit active.com/donate/phfzenride.

About Pediatric Hydrocephalus Foundation, Inc.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) 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.

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