When Danielle Roberts was pregnant with her second child, Reagan, her doctor diagnosed hydrocephalus, a condition in which an excess of cerebrospinal fluid built up in the infant’s brain. Doctors delivered Reagan
on March 8, 2011, at Vanderbilt Children’s Hospital in Nashville.

Years earlier, another Hartselle woman, Leslie Etheridge, went to Decatur General Hospital for what she thought would be a normal delivery. “I ended up in an emergency (cesarean) section,” Etheridge said. “Even then, I had a difficult time because the baby’s head was so long.” She said she had never heard of hydrocephalus until her doctor explained the condition of her only child, Kane.

“The term ‘water head’ or ‘water babies’ from high school days came to mind,” she said. “Our son was taken immediately to (Children’s of Alabama) in Birmingham.”

When Etheridge heard about Roberts, she sent an email to offer support.

“During the past year, we’ve emailed each other, spoke on the phone and gone on Facebook,” Roberts said. “But we’ve never met.”

That will change Saturday at Wilson Morgan Park when the families converge at noon for the first fundraiser in Alabama for the Pediatric Hydrocephalus Foundation.

The event, organized by Roberts when she became director of the state chapter late last year, will run until 3 p.m. The foundation formed more than three years ago and has chapters in 27 other states.

The Morgan County sheriff’s helicopter will drop in, and Hartselle police donated an old police cruiser for a smash-up as part of the fundraiser.

“People who want to take part will wear safety goggles,” Roberts said. “Three hits will cost $5 and five hits will cost $8.”

The group requests a $5 donation for each person who attends and meal tickets for the hot dog bar will be $2 each.

Roberts and her husband, Kel, have another child, Kayden, 6, a first-grader at Priceville Elementary School.

Etheridge and her husband, Mike, have assisted Kane, 17, their “miracle baby,” through the ups and downs of life. He is a senior in the Instructional Resource Center at Hartselle High School.

Roberts has no idea how many people from the community will turn up to show their support Saturday or how many new friends, whose lives are impacted by hydrocephalus, she will meet.

“We’re so new to this,” she said. “We don’t know of many other families dealing with the disease. But we’d like for all of them in our area to come forward so we can offer each other support.”

Kane Etheridge, taking a break from an adapted physical education class at Hartselle High on Wednesday, eagerly spoke about his interests, which begin and end with “Star Wars” movies.

“I’ve recently started making my own movie, called ‘The Rise of a New Empire,’ ” he said. “I’ve got 50 percent of the manuscript done, I think. I’m typing it on my dad’s computer.”

Belinda Kay, a Hartselle High special education teacher, said Kane is involved in numerous classes and activities at the school.

“He’s very well liked and a very confident person,” Kay said. “At least half the students know him by name. The Tiger Buddies Club nominated him for Homecoming King.”

The Etheridge family is considering a vacation to Los Angeles in 2013 to honor Kane’s graduation. And Kane is confident he will meet George Lucas at the filmmaker’s home in nearby Modesto.

“I’m going to go over my movie with him and ask him for a job,” Kane said. “And when he sees my movie, he might hand me his company.”

Strikes 1 in 500 children

AR KIDSfest raises awareness about brain condition

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LITTLE ROCK, AR – Sunday, an Arkansas woman organized the Little Rock KIDSfest to raise awareness about a rare brain condition impacting her son’s life.

Hydrocephalus has no cure right now and happens when fluid builds up inside the skull leading to brain swelling.

Cessilye Lawson is the Arkansas State Chapter Director for the Pediatric Hydrocephalus Foundation.

“We’re here to find a cure. There’s no cure for hydrocephalus. Many children endure several brain surgeries because the treatment right now is several brain surgeries. The treatment right now is an implanted device in their brain,” says Lawson.

Her son, Taylor, has the rare brain defect which causes baby’s heads to double their normal size.

Sunday, Lawson organized the first Little Rock KIDSfest to help find a cure for the brain condition which affects about one-million Americans.

“Last week we had one that passed away. She was four and she had endured 25 brain surgeries, so this today is dedicated to McKinna,” says Lawson.

Lawson brought in a petting zoo, fire trucks and bounce houses to allow kids to have fun while their parents raise awareness to try to find a cure.

“If we all stick together, we can make it better for the cause,” says father Neil Hood.

“This is something we can do to try to raise money and awareness and help in any little way,” says mother Karen White.

“My three little girls, they don’t have it, but they could have it. So it’s always good to donate, especially for the kids programs,” says volunteer Calvin Key.

WASHINGTON– Congressman Leonard Lance (NJ-07) issued the following statement in support of September as National Hydrocephalus Awareness Month.

“Today we recognize September as National Hydrocephalus Awareness Month. For too long, little attention has been paid to hydrocephalus.

I am certain that with federal support for additional research we can develop a better treatment, and eventually a cure, for those suffering from hydrocephalus and help them live healthier, fuller lives.”

In the House of Representatives, Lance is a founding member and co-chair of the Congressional Hydrocephalus Awareness Caucus and actively works to raise awareness of the disease.