Walkers pound the pavement in hope of a cure for Hydrocephalus

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Zoe Postma's head was measured at 64 centimeters in diameter, but she now is living a rather normal life. | Matthew Schwerha

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Hundreds of people gathered on the lawn of Soldier Field Saturday, Sept. 15, for the Hydrocephalus Association’s 2012 Chicago Walk.

The walk raised more than $50,000 to put toward finding a cure for hydrocephalus.

Hydrocephalus is a condition that causes an abnormal accumulation of cerebrospinal fluid within the brain's ventricles that affects a wide range of people including infants, children and adults.

The number of people present didn’t even begin to describe the unique stories carried by so many of the individuals that have been affected by the condition.

Carter Hiland

Three weeks prior to his birth, Carter Hiland's parents, Derek and Amber Hiland of Dekalb, found out that he had hydrocephalus. He needed two brain surgeries before turning 3 months old.

After celebrating his first birthday on May 26, 2011, Carter was doing great and things were promising.

“His older brother got sick and we just thought Carter had the flu too,” Amber said. “He was cranky and sleeping a lot and it ended up being a shunt malfunction.

Fifty percent of shunts — the device used to treat hydrocephalus — fail within the first year of implantation. It is not uncommon for someone with hydrocephalus to have more than 10 shunt revisions.

After being airlifted to Children’s Memorial in Chicago, Carter died June 2, 2012.

Carter’s Crew, made up of family, friends and others that Carter touched, raised almost $5,000 and had close to 75 people walking in his memory.

Eric Tolbert, 27

From the ages of 19 to 27, Eric Tolbert, of Park Ridge, has had zero brain surgeries and is doing quite well.

It was those 19 years before that were tough, when he had to endure more than 500 brain surgeries because of his diagnosis with hydrocephalus.

“I barely have a memory and no vision to the side,” Tolbert said. “I pretty much lived at the hospital.”

Tolbert can’t drive, but is known as the guru of public transportation in his family circles, as his supporters relied on him to navigate them to Soldier Field for the walk.

Zoe Postma, 7 months

Jason Postma and Dina Kapernakas-Postma’s daughter, Zoe, from Chicago, was diagnosed with hydrocephalus when Dina was 22 weeks pregnant and the swelling in her ventricles left her with almost no brain.

“They wanted to terminate the pregnancy,” Jason said. “That just wasn’t an option for us.”

Zoe’s head was one of the largest ever recorded at Children’s — being 64 centimeters in diameter.

Today, Zoe and her mother are doing well, besides one restriction.

“Everything, as far as development, is normal,” Jason said, “but the ability to lift her head because her neck isn’t strong enough.”

Follow Matthew Schwerha, who has Hydrocephalus, on Twitter @MatthewSchwerha