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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Durango city councilors were set to approve Tuesday a proclamation drafted by Christina Brown that adds hydrocephalus to the crusades, causes and campaigns for which September is recognized.

Brown, whose son, Jaden, 4, has the condition, gained a similar proclamation last summer from Gov. John Hickenlooper. September was designated National Hydrocephalus Awareness Month by Congress in 2009.

Hydrocephalus, found in about 1 in 500 births, is a swelling of the brain caused by the accumulation of the fluid that surrounds the brain and spinal cord.

Brown, chairwoman of the state chapter of the Pediatric Hydrocephalus Foundation, said Tuesday that a 5-kilometer walk fundraiser for the cause is scheduled Sept. 20 in the Three Springs area.

The 5K walk begins at 10 a.m. at the plaza, 175 Mercado St., near Mercy Regional Medical Center. Walkers can register starting at 9 a.m.

Online registration can be done at http://www.active.com/donate/phfwalkco2014

daler@durangoherald.com

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Durangoan, whose son has hydrocephalus, pressed for Colo. representatives’ support

The proclamation by Gov. John Hickenlooper designating September as Hydrocephalus Awareness Month came through the effort of a Durango woman whose son has the condition.

Christina Brown drafted a proclamation in mid-July and sent it to the governor’s office. She learned a month later it had Hickenlooper’s signature.

Brown’s son, 3½-year-old Jaden, has hydrocephalus, a swelling of the brain caused by an accumulation of the fluid that surrounds the brain and spinal cord, a condition found in one in 500 births.

About 1 million adults and children in the United States have hydrocephalus.

Brown said she found support from the region’s representatives in Washington, D.C., when she visited Capitol Hill with 140 members of the national Pediatric Hydrocephalus Foundation last week. The contingent represented the country from coast to coast.

Brown is the founder and director of the Colorado chapter of the Pediatric Hydrocephalus Foundation. She can be reached at christina@hydrocephaluskids.org.

She said U.S. Sens. Mark Udall and Michael Bennet and U.S. Rep. Scott Tipton appeared receptive when she urged them to support efforts to fund hydrocephalus education and research.

Brown said Jaden is doing very well and is receiving speech, physical and occupational therapy.

Contact Christina Brown at christina@hydrocephaluskids.org for more information.

The mother of a 28-month-old Durango boy with hydrocephalus has taken on the leadership of the Colorado chapter of the national Pediatric Hydrocephalus Foundation, a support group with a presence in 25 states.

“I’m promoting awareness of hydrocephalus and raising funds for research,” Christina Brown said Friday. “There is no cure now, which is unacceptable.”

Hydrocephalus is a condition in which cerebrospinal fluid accumulates in the brain. This can cause pressure in the skull, resulting in enlargement of the head, convulsion, tunnel vision, mental disability and possibly death.

The first fundraiser for Brown’s group is set for Sept. 23, when participants will bowl at Rolling Thunder Lanes at the Sky Ute Casino in Ignacio.

Brown began gathering information on hydrocephalus when a pediatrician recommended during a well-baby check at 4 months that her son, Jaden, be tested for a neurological disease. Examinations revealed that he had hydrocephalus and hemiplegia (stroke-induced spasticity) on his right side.

She rattles off facts such as:

One in 500 newborns receives a diagnosis of hydrocephalus.

The disease can be congenital or acquired.

Hydrocephalus is the No. 1 reason for pediatric brain surgery.

Americans spend $1 billion a year on treatment for hydrocephalus.

Research into diabetes is funded at $6 per person, hydrocephalus at 30 cents per person.

Brown was in Washington for two days two weeks ago with other families who have children with hydrocephalus to educate legislators and others about the disease and promote research.

“There were 20 families from 14 states,” Brown said. “We’ll contact them again next year for funding for research.”

Josh Green, a spokesman for U.S. Rep. Scott Tipton, R-Cortez, said the group left a packet of information for the congressman. Tipton wasn’t in the capital at the time.

Brown knows four families and one adult in Durango who have hydrocephalus in the family. She said there are about 30 similar families in the Four Corners.

“Jaden is fine,” Brown said. “He just had surgery as a result of being tongue-tied and is doing well.”

The recently formed hydrocephalus chapter held its first meeting in July. The next meeting is from 5 to 7 p.m. Oct. 12 in Durango Public Library.

Hydrocephalus is an incurable condition in which excessive spinal fluid gathers in the brain, placing potentially damaging pressure on tissues.

Jaden, who will be 2 on April 26, was the subject of a story in The Durango Herald on March 13, 2011, about his mother’s effort to form a support group for people with hydrocephalus. Jaden has a shunt in his head to drain spinal fluid.

Jaden will be the boy featured in promotions for National Hydrocephalus Awareness Month in September. Mackenzie Holcomb, an 11-year-old girl from Ohio, will be the featured girl.

“We’re happy to be part of this recognition,” Christina Brown said Friday. “It’s so cool.”

Jaden’s designation as the face of hydrocephalus carried a $500 stipend, which the family is going to donate to Children’s Hospital in Denver for research, Brown said.

Hydrocephalus occurs about once every 500 births.

The Pediatric Hydrocephalus Foundation is an all-volunteer nonprofit that works to raise awareness about the malady, promotes research and serves as an advocate for the hydrocephalus community.