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.

His life, however, almost ended as soon as it started.

Hawke has a rare condition called hydrocephalus, where there is an excessive amount of fluid in the brain. But that’s just a part of his story.

When Carmen Adams of North Branch was pregnant with Hawke and his twin brother, Jackson, surgery had to be done inside the womb because they were sharing blood vessels. That caused some complications with the pregnancy and she had to have an emergency C-section 12 weeks before her due date.

On May 14, 2008, both twins were found dead at birth. Resuscitation attempts to revive both sons began and 12 minutes later Hawke took his first breath. Jackson did not live.

During the resuscitation attempt, however, a hemorrhage formed in Hawke’s brain causing the hydrocephalus, said Jason Adams, Hawke’s father.

“We say God gave him breath,” Jason Adams said. “It was a strange moment, because at that time I was happy, excited and scared at the same time. But we had held our dead son Jackson for 40 minutes. That was a surreal experience, obviously. You’re super excited because your son who was dead is alive but you are still holding your son that is dead.”

Hawkes has had a total of 10 brain surgeries and has spent two of his four birthdays in the hospital.

Jason Adams, as Michigan co-director for the Pediatric Hydrocephalus Foundation, now hopes to focus his attention on raising funds and awareness for the rare condition and research.

On July 27, the Adams family is organizing a fundraiser to raise money for the Foundation. It will take place from 2 p.m. to 7 p.m. at the Lapeer historic courthouse lawn and pavilion, 255 Clay St. in Lapeer.

Beautiful U salon, 232 W. Nepessing St. in Lapeer, will offer haircuts and 70 percent of the proceeds will go toward the foundation. All other donations will go directly to the foundation.

The event will also have events for the whole family, including clowns doing face painting, and obstacle courses.

“It’s an opportunity for people to come out and have some fun with the family,” Jason Adams said.

When Hawke’s mother, Carmen Adams, was first told her son had hydrocephalus, she had never heard of that before, she said. Bringing more awareness to the condition is important, she said.

Hydrocephalus is believed to occur in about 1 in every 500 births. Lack of advancements in treatment have left many people with hydrocephalus unable to lead full and productive lives, according to the Pediactric Hydrocephalus Foundation’s website, www.hydrocephaluskids.org.

Individuals with hydrocephalus need shunts put in to drain the excess fluid, Jason Adams said, but they could break every couple of years, requiring another surgery.

Seven of Hawke’s 10 brain surgeries have been to fix something with his shunt, but living with hydrocephalus is just a way of life for Hawke now, said Carmen Adams.

She said wishes she was more educated from the start. She hopes the event will help others.

“I know Hawke is a miracle. (The expectations) were really grim. (Doctors) weren’t sure if he could swallow or eat … but he eats on his own. Boy, are we thankful for all that he can do,” Carmen Adams said. “They didn’t think Hawke would walk and a whole bunch of stuff. Not having a heart rate for 12 minutes all stacked against him.”

Hawke celebrated his fourth birthday last month and his parents said he is progressing every day.

He acts like any other kid, said Jason Adams, with the exception that he can’t walk on his own and he’s delayed in some fine motor skills. His speech is improving all the time and he does walk with a walker, he said.

“It’s pretty exciting. He could have been a vegetable. … He smiles a lot. He has an amazing spirit,” Jason Adams said.