How one person impacts the hydrocephalus community

Sheri Burdine remembers the sense of isolation she felt when she was diagnosed with hydrocephalus at the age of 11. It was her personal experience that prompted her to found Hydro Angels Over America, a Texas-based nonprofit dedicated to raising awareness of hydrocephalus, and prove one thing to others diagnosed: You are not alone.

Commonly referred to as “water on the brain,” hydrocephalus is a lifelong chronic illness caused by complications with the flow of cerebrospinal fluid that encompasses the brain and spinal cord. The condition can cause lethargy, seizures and head enlargement among other symptoms. The illness can affect anyone from birth, to childhood or adulthood. One out of every 500 children is born with hydrocephalus making it more common than Down’s syndrome.

Burdine has been active in hydrocephalus awareness since 2007 when she organized Texas’ first Hydrocephalus Walk at Landa Park in New Braunfels.

“I had a piñata; I didn’t have a clue what I was doing,” she said. “It was the silliest thing ever. I had food from almost every restaurant in town; I had clowns and I thought, ‘I don’t know what I’m doing,’ but they came, and it was awesome. I learned from there.”

After years of giving to other charities, but not knowing specifically where her contributions were going, Burdine filed for a 501C(3) license in 2010 to make Hydro Angels Over America a legal nonprofit organization.

“From that day forward we’ve paid as little as $50 for a copay,” Burdine said. “We’ve paid for therapy for a little girl that could not work at all.”

Burdine does not want families to feel hesitant about coming to Hydro Angels for help.

Jessica Gottschalk currently serves as vice president of Hydro Angels’ board of directors, but originally contacted Burdine when her daughter Ella, 3 months old at the time, was diagnosed with hydrocephalus in 2012.

“I think the thing that is most genuine is that she knows everyone who calls her,” said Gottschalk. “She knows the stories, she knows the families and she truly wants to help them. She wants to help them because she knows them and they’re now a part of her community and the hydrocephalus community.”

Gottschalk was living in Chicago when her daughter was diagnosed, but later moved to Austin. After coming in contact with Hydro Angels and moving closer, she was compelled to volunteer with the organization.

“I wanted to give back to Hydro Angels and I wanted to do what I could because I saw all the good they were doing,” Gottschalk said. “I wanted to raise money, do what I could and help the foundation so that we could help other people.”

Read about Sheri Burdine’s mission to raise money to fund research for hydrocephalus treatment

Burdine’s motivation to help others is fueled from the battle she continues to fight herself. When she can, she speaks to parents and kids at schools and hospitals who may feel confused about the emotional trauma hydrocephalus can sometimes cause.

“You just don’t get it until you walk in those shoes,” she said.

When Hydro Angels Over America visits a patient in the hospital, Burdine wants it known that they will do everything in their power to give them comfort, which is why their motto is simple: You are not alone.

 “There is hope. I can’t promise you for how long they’re going to be here,” Burdine said, pointing to the memoriam wall in her office. “But I can tell you that you’re not going to walk this journey alone as long as Sheri Burdine is in this room.”

Not every family who contacts Hydro Angels is looking for medical assistance. In Gottschalk’s case, she was looking for someone to understand the complications her daughter was experiencing.

“You call and you generally talk to Sheri,” Gottschalk said. “She’s fielding phone calls, now nationally, that she takes on their problems as their own. She really does everything she can through Hydro Angels Over America, we all do, to help.”

Hydro Angels has assisted many families and children, including 4-year-old “Baby Klaus.”

Klaus was 10 months old when he was rushed to the hospital in San Antonio after his aunt contacted Burdine and Hydro Angels all the way from El Paso. Burdine contacted Dr. David Jimenez, a pediatric neurosurgeon, and made arrangements to get Klaus the help he desperately needed.

Klaus’ condition was so severe that he had four brain surgeries to drain 30 pounds of fluid from his brain.

Today, he has made significant progress and a picture of him hangs in the Hydro Angels office.

Despite all Hydro Angels is doing, Burdine says there is still a long ways to go to not only provide for families that need assistance, but in spreading the word about this common condition that does not have the widespread awareness other illnesses do.HA1

In 2012 Hydro Angels launched a campaign to bring a visual symbol to hydrocephalus awareness. They adopted a dark and aqua blue awareness ribbon and Burdine will go to Congress this year to pitch it as an official national symbol of hydrocephalus awareness.

Hydro Angels Over America has been in contact with sponsors around the area and they have recently partnered with Dell Children’s Hospital in Austin to give any child who is diagnosed with hydrocephalus a “Hydro Bear” teddy bear. Burdine has also written two children’s books depicting Hydro Bear’s journey through diagnosis and living with the chronic illness, making it relatable to children. The book is written with medical descriptions at the bottom of the pages for parents to become more knowledgeable of what their child may be going through.

Funding from generous sponsors such as $5,000 from Valero has enabled the organization to fund events to not only help raise awareness, but to give patients a chance to live their lives.

Hydro Camp is an all-expense paid camp for 12 children with hydrocephalus and their families at the Jellystone camp grounds at Canyon Lake. This year’s 5th annual event will be held June 27-28.

“The purpose was: let’s forget about brain surgery,” Burdine said. “I don’t want to think about it, I don’t want you to think about it. I’m the magic fairy of the weekend. If they want it, they get it.”

Hydro Camp is the world’s only camp for children with hydrocephalus.

Around the Austin area, Burdine and Gottschalk helped organized Bowling for a Healthy Brain and a charity golf classic.

They initiated the Hydro Angel Award and Continuing Education college scholarship to reach out to older people who suffer from the illness. The Hydro Angel Award is given to a person who experiences their own dream come true similar to the Make-A-Wish Foundation.

Hydrocephalus has been known to take the lives of some of those diagnosed. In 2011 after the passing of Jennifer Destiny Mendez—whose picture hangs on the office wall—Hydro Angels created Project Daisy that provides families with the funds for proper burial and/or cremation ceremonies.

To get involved with Hydro Angels Over America, visit http://hydroangelsovertexas.org or call (830) 620-HAOA (4262).

Watch Sheri Burdine explain the process of inserting a shunt into the brain:

 

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