It is with so much sadness that I have to let you all know that we have lost another child to the horrible disease/condition Hydrocephalus!

Our own PHF Ohio State Chapter Director, Brandy J., lost her little girl last evening. Please keep them in your prayers.

We are pleased to announce that 2 more Members of Congress have joined the Congressional Pediatric & Adult Hydrocephalus Caucus. They are South Carolina Congressman Joe Wilson & Congressman Mick Mulvaney, also of South Carolina.

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.

Amanda Pierce, of Huger, and her two children, including 2-year-old Ava, who has hydrocephalus, drove to Washington, D.C., and joined 20 families from 14 states in meeting with their elected representatives.

Hydrocephalus is a condition where excessive fluid gathers in the brain, abnormally widening spaces and placing potentially harmful pressure on brain tissues. Due to lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.

It’s one of the most common birth defects, but chances are you haven’t heard of Hydrocephalus. Donna West hadn’t either, until her baby daughter Willow was diagnosed with the condition.

“We were scared, we cried. We definitely looked at her wanting to know why,” said West. “Very worried about what type of lifestyle she was going to have.”

West said she first noticed something was wrong early on. Doctors would later confirm the infant had the condition.

“She was 2 months old and in her car seat, she tilted her head,” explained West. “When we were told it was so bad that it didn’t look like she had a brain, we were definitely scared.”

Hydrocephalus, which means “water on the brain” is a condition where excessive fluid builds up on the brain. It can be acquired after head trauma, develop during a pregnancy issues or be hereditary.

There’s no cure, but the most common treatment is implanting a small device called a “shunt” during surgery to help the patient drain the extra fluid from the brain. In 12 months, Willow underwent 12 surgeries to treat her condition.

Just shy of reaching two years old now, West says Willow is doing good.

“We’re very very blessed that she has the abilities that she does,” West told FOX 17 News. “Her brain has been able to fluff out in her head.”

West has taken her experiences with the condition and turned it into platform to raise awareness for Hydrocephalus. According to the Hydrocephalus Foundation, one to two of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors.

“I decided to join the Pediatric Hydrocephalus Foundation,” she said. “In order for me to get the word out, I’m the Co-Director here in Michigan.”

West has held a fundaiser for the non-profit every month this summer in West Michigan. At the end of August, she took her fight to Washington, DC, where she meet with Michigan lawmakers to ask them to join a caucus started by the Pediatric Hydrocephalus Foundation.

She explained, “If we get more Congress representatives to join on, then when the legislation comes up for funding then they’ll be more likely to pass the bill… Right now we know research money is tight, we understand the budget in the country, so right now awareness is the key.”

West is planning another fundraiser for this Sunday, September 9th. She’s teaming up with Hydro Angels Over America to host “Bowling for a Healthy Brain” at Westgate Bowl.