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.

Rep. James Langevin & Rep. David Cicilline Join Hydrocephalus Caucus

Murphy Joins Hydrocephalus Caucus

Hydrocephalus is a neurological condition caused by abnormal buildup of cerebrospinal fluids (CSF) in the ventricles of the brain. The condition can occur at any age, affects an estimated one million Americans, and in some cases, can cause death. One out of every 500 babies is born with hydrocephalus in the US, and is the leading cause of brain injury in children. Instances of hydrocephalus are also being found in an increasing number of veterans who develop the condition as a result of brain injuries suffered on the battlefield. Unfortunately, there is no known single cause of hydrocephalus and there have not been significant advancements for treatment over the last fifty years.

Jenna Sciulli, a resident of Chartiers Township in Washington County, has been working to raise awareness about the issue both locally and nationally. Sciulli, who serves as Pennsylvania State Director of the Pediatric Hydrocephalus Foundation (PHF) recently visited Rep. Murphy’s office to discuss the challenges facing parents of children with this condition. She knows first-hand what it’s like because her five-year-old son has hydrocephalus and must attend speech and physical therapy every week.

“I commend Mrs. Sciulli for her tireless efforts to educate lawmakers and the public about this healthcare issue,” said Congressman Murphy, who serves as co-chair of the Doctors Caucus in the House. “Thanks to her dedication, I am joining the Congressional Hydrocephalus Caucus to help inform members of Congress about important research into hydrocephalus diagnosis and treatment, so we may save lives and one day find a cure.”