DETROIT, MI- Employees of one of General Motors Co.’s largest Michigan production facilities are rallying together to help raise awareness of an incurable disorder that is impacting one of their fellow employees and his family.

Hawke Adams, 5-year-old son of quality engineer Jason Adams at GM Detroit-Hamtramck Assembly, has hydrocephalus – a disorder that causes excessive accumulation of fluid in the brain that creates harmful pressure that can be fatal.

“It’s real personal to me,” said Jason Adams, who also serves as co-director of the Pediatric Hydrocephalus Foundation. “So, the plant leadership, UAW and GM as a whole got behind the idea of, ‘let’s do something.’ ”

As part of a monthly “diversity initiative” program, workers and plant leadership decided to help sponsor a benefit concert with the “Teen Nation Tour” in an effort to help raise awareness of the disorder, which has already caused Hawke to have 10 brain surgeries.

Doneen McDowell, Detroit-Hamtramck plant manager, said once hearing about Hawke, the Diversity Initiative team felt the concert was a great opportunity to help.

We wanted to figure out a way we could support Jason because he does a lot for the Pediatric Hydrocephalus Foundation,” she said. “Not only because his son has it, but he’s developed a connection with other families that have it.

“We felt a connection the minute he started talking about it.”

The concert, which features a number of young singers, is scheduled for 7 p.m. Saturday at the UAW-GM Center for Human Resources, 200 Walker St. in Detroit. Doors open at 5:30 p.m., followed by a special red carpet entrance by the performers at 6 p.m. and a VIP meet-and-greet at 6:30 p.m.

Tickets are still available starting at $5 for children 6-12 years old and $10 for adults and VIP tickets to meet the performers. Children under 6 years old are free. For tickets, call 810-441-9170 or email Jason.Adams@gm.com.

Proceeds from the “Teen Nation Tour” concert will go toward the Pediatric Hydrocephalus Foundation, which Jason Adams and others also annually lobby for on Capitol Hill.

Performers include former “X Factor” contestant J Ryan, 14, of San Antonio, Texas; Tristan Blaine, 14, of Frisco, Texas; Nic Neufeld, 11, of Dodsland, Saskatchewan; Faith Marie Shirley, 15 of San Antonio, Texas; Collin Kozola, 17, of Naperville, Illinois, Katie Akin, 14, of Atlanta, GA; and Kaity Floyd, 20, of Dallas.

The number of people who develop hydrocephalus or who are currently living with it is difficult to establish since the condition occurs in children and adults, and can develop later in life. Some estimates report one to two of every 1,000 babies are born with hydrocephalus.

For more information on the Pediatric Hydrocephalus Foundation, or to donate, visit hydrocephaluskids.org.

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PHF Michigan State Chapter Co-Director’s Jason & Carmen Adams and Donna West are featured in the September Issue of The Altum Advocate

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.