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Noah Benz

Noah Benz, 2, has had 17 brain surgeries in one year due to hydrocephalus.

Raising awareness about hydrocephalus — and money to support research at Seattle Children’s — is the goal of the new Hydrocephalus Research Guild.

Sometimes called water on the brain, hydrocephalus is a life-threatening condition in which an abnormal amount of cerebrospinal fluid (CSF) builds up in the brain because the body overproduces it or can not drain it properly.

Doctors can manage the condition by placing a shunt inside one of the brain’s four ventricles to drain the excess CSF to another part of the body. Though effective, shunts often malfunction or cause infections, and most people with hydrocephalus require multiple brain surgeries throughout their lives.

Lori Poliski and her husband, Paul Gross, organized the guild and a support group for families after their young son, William, was diagnosed with hydrocephalus after a brain hemorrhage shortly after his premature birth. “Our elected officials can’t influence the NIH for research dollars if they don’t know what hydrocephalus is or how to say it,” says Poliski.

The family of Noah Benz is active in the guild. Only 2, Noah has had 17 brain surgeries in the past year to adjust his shunts. “There’s not one moment with Noah that I take for granted,” says his mom, Louise Benz. “You never know when someone with hydrocephalus will be back in that operating room or if they will come out of surgery the same person they went in.”

Learn more about the Children’s Hydrocephalus Support Group and the Hydrocephalus Research Guild.

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