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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FAIRFIELD, Conn. — ZenRide Spinning Studio in Fairfield will host the first “Biker-Barre” to help fund research for a cure and awareness about a rare and complex childhood medical issue on Sunday, Sept. 13.
The ride will be at the spinning studio at 869 Post Road in Fairfield beginning at 4 p.m.

The event raises money for the Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization. Pediatric Hydrocephalus is the build up of spinal fluid in the brain, which can lead to injury or even death if not treated.

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 PHF. Fairfield’s Bar Method is co-hosting the event with ZenRide.

Fairfield resident Cindy Shanley, a ride instructor at ZenRide, has a young daughter, Reagan, with Pediatric Hydrocephalus. Reagan turns 3 years old on Oct. 8. Last year, Fairfield’s Sally Fulcher ran the Fairfield Half Marathon to raise awareness and funds for the PH Foundation. She netted nearly $17,000.

The 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.

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.

September is National Hydrocephalus Awareness Month and it is estimated that one in 500 babies in the United States are born with Hydrocephalus each year.

The event costs $40 to reserve a bike. Click here to register online and click here to donate.

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A 16-year-old suffering from the incurable brain condition fundraises for a cure

HORSEHEADS, N.Y. (18 NEWS) –

Bella Sacharczyk is 16 years old. She’s smart, funny, and charismatic. A typical teenage girl. You would never guess that she’s had 20 brain surgeries, but Bella has Hydrocephalus, a incurable condition that involves water in the brain.

On Sunday, she joined together with her family and friends to raise awareness about the disease and fundraise for a cure.

“I feel it’s important for everybody to know about it and to raise awareness, just so that one day some children like me won’t have to suffer,” Bella said.

“We’re just trying to be out there anyway we can to raise awareness to raise funding for a cure,” Denise Sacharczyk, Bella’s mother, said. “There is no cure for children or people with Hydrocephalus.”

Even though people living with Hydrocephalus can experience some pretty serious physical and mental complications, Bella’s family wants people to know her struggles don’t define her or limit her.

“Hydrocephalus is, it can be scary, but doesn’t have to be scary… that the children like Bella, she does everything, she’s not afraid,” Denise said.

“I like to do my schoolwork, and I like to educate people about Hydro, hang out with my family,” Bella said.

Bella is grateful for all the support she got from our community.

“That everybody came here to support me… I feel loved and it’s the best feeling in the world.”

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