“It’s like stabbing you in your head. For migraines it’s horrible, and I went to the emergency room countless times,” Lauryn Freeman said.

Lauryn learned last year that these were more than painful headaches. A Cat scan revealed a large amount of water on her brain, and she was diagnosed with Hydrocephalus.

“I knew what it was, I knew what to expect, I knew how hard it could be so I was devastated,” Lauryn’s mother Rebekah Wright said.

Hydrocephalus, also known as “Water-head” is when spinal fluid that is normally in your head builds up and it’s not able to drain. Treatment for Lauryn meant having surgery to get a shunt put into her head.

“By putting the shunt in place, you can actually set it so the pressure will be where you want it to be at, for that to actually let spinal fluid drain. So the pressure won’t get too high in her head and cause further damage in terms of brain injury or complications such as headaches or vision changes,” Lauryn’s doctor, Pediatric Neurologist Dr. John Flatt said.

Since her diagnosis, Lauryn’s mother has started the first Pediatric Hydrocephalus Foundation chapter in Louisiana. She’s currently organizing its first fundraiser, and it will be held March 27th at the Icegators’ playoff game. If you use the code “Ice” you get tickets to the game for 10 dollars, and one dollar from each ticket will be donated to the organization.

9-Year-Old Matthew Elicea From Bakersfield Selected as National “Face” of Hydrocephalus Awareness for Incurable Brain Condition

Bakersfield, CA – When looking quickly at 9-year-old Matthew Elicea, one would see a happy, athletic, & energetic boy. When you look a little closer and see the scars and stitch marks on his head, a different story is being told.

Matthew suffers from an incurable brain condition called Hydrocephalus, and the scars and stitch marks are the result of the multiple brain surgeries to implant the device in his brain, known as a shunt, that keeps him alive.

Occurring in approximately 1 of every 500 births and in over One Million Americans today, (including former Congresswoman Gabrielle Giffords), Hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.

Untreated, Hydrocephalus could be fatal.

Matthew was selected as one of two children to serve as this year’s “National Face of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Matthew, whose family lives in Baskersfield, will represent the boys, while 7-month-old Aila Elmore of Indiana will represent the girls.

Debra Shoulet, Matthew’s mom, is ecstatic that her son will be the “Face” of Hydrocephalus Awareness for the Hydrocephalus Community in 2013; “One thing we believe we can do, is provide hope to parents, like us, who are given the heartbreaking news that comes with a diagnosis of hydrocephalus. There is HOPE!!! Miracles do happen! We live with a miracle. And some times those miracles are as small as a smile!”

Matthew will be featured in advertisement campaigns & promotional materials for Hydrocephalus Awareness as we head towards the 5th Annual “National Hydrocephalus Awareness Month” in September.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 30 state chapters, provides support to families, friends and children affected by this incurable brain condition.

PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at State and Federal levels to push for more research and support in the fight against Hydrocephalus. Donations are tax-deductible.

Since 2010, PHF awarded $170,000 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for research and education. For information, visit HydrocephalusKids.org.

7-Month-Old Aila Elmore From Gosport Selected as 2013
National “Face” of Hydrocephalus Awareness for Incurable Brain

Gosport, IN – When looking quickly at 7-month-old Aila Elmore, one would see a happy baby girl. When you look a little closer and see the scars and stitch marks on her head, a completely different story is being told.

Aila suffers from an incurable brain condition called Hydrocephalus, and the scars and stitch marks are the result of the brain surgery she has had to install the device in her brain, known as a shunt, that keeps her alive.

Occurring in approximately 1 of every 500 births and currently affecting over One Million Americans today, Hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.

Untreated, Hydrocephalus could be fatal.

Aila was selected as one of the two children to serve as this year’s “National Face of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Aila, whose family live in Gosport will represent the girls, while 9-year-old Matthew Elicea of California, will be representing the boys.

Aila will be featured in advertisement campaigns & promotional materials for Hydrocephalus Awareness as we head towards the 5th Annual “National Hydrocephalus Awareness Month” in September.

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization, educates the community by creating awareness about Hydrocephalus. PHF, with 30 state chapters, provides support to families, friends and children affected by this incurable brain condition.

PHF assists the medical community by raising funds to search for treatment options, and ultimately, a cure. PHF advocates on behalf of members while working with policy makers at State and Federal levels to push for more research and support in the fight against Hydrocephalus. Donations are tax-deductible.

Since 2010, PHF awarded $170,000 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for research and education. For information, visit HydrocephalusKids.org.

Jackson’s son, Kashawn Stroman, 14, acquired hydrocephalus from a brain tumor. He’s undergone several surgeries to repair and replace a shunt that drains the fluid from his brain.

“When Kashawn was diagnosed, we had no idea what it was,” said Jackson, who is a Town of Binghamton resident.

The mother of three is now organizing a local chapter of the Pediatric Hydrocephalus Foundation, helping to raise money and awareness about the affliction and provide help for those affected by a diagnosis.

“I just thought it was something I wanted to be involved in to help other families, to have a support system for other families,” Jackson said.

Over the past several weeks, fundraisers have been planned and Jackson has reached out to local hospitals and people, sometimes through social media sites. Jackson has even come across people from her past who are also dealing with the condition.

“A friend I grew up with has two daughters with hydrocephalus,” she said.

Most of those affected with hydrocephalus are born with it, said Kim Illions, president and chief executive officer of the Pediatric Hydrocephalus Foundation. One in every 500 babies born has the disease. Others, like Stroman, get it from trauma to the brain, she said, noting that another type of the disease also affects the elderly. The excess fluid, if not drained, places potentially harmful pressure on the brain and can be fatal if left untreated, Illions said, and there is no cure.

Since there is little information out there, it’s vital to get the word out through organizations like the Pediatric Hydrocephalus Foundation, Illions said. The Binghamton chapter will be the fourth in New York, with others in Westchester and Orange counties and Manhattan, she said.

“It’s really important because there are families who have no support whatsoever,” Illions said. “They feel very alone.”

The PHF’s Michael Illions, Vice-President & Director of Advocacy, & Jason Adams, PHF Michigan State CO-Director, attended the Rare Disease Lobby Day & Conference last week in Washington DC.

Michael met with staffers from Senator Robert Menendez & Congressman Rush Holt’s office, and personally with Congressman Leonard Lance, while Jason met with staffers from Congressman Mike Rogers, Congresswoman Candice Miller & Senator Carl Levin’s office.