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UPDATED: Lake Erie loop brings awareness

Jessica Cuffman • Sep 17, 2013 at 3:06 PM

One family’s mission to raise awareness about a dangerous brain condition has taken their patriarch around Lake Erie on his bicycle.

Benny Higgenbotham Jr., of Sandusky, most recently completed a nine-day trek of more than 650 miles around Lake Erie, spreading the word about his grandson’s neurological condition.

Hydrocephalus is a buildup of fluid in the brain. Doctors use a shunt to drain the excess fluid.

When Higgenbotham and the rest of Team J take cycling trips, they pass out cards directing people to the Hydrocephalus Association’s website. “People just look at you and say, ‘What’s that about?’” he said. “That’s why we ride and that’s what we promote when we ride.”

Jesiah Page, 9, Higgenbotham’s grandson, was diagnosed with hydrocephalus when he was 15 months old, said his mother, Bettyna Turner. “A lot of people have this,” she said. “You just don’t hear about it.”

Two of every 1,000 babies are born with hydrocephalus, making it more common than Down’s Syndrome, according to the Hydrocephalus Association’s website. Doctors have replaced Jesiah’s brain shunt 13 times, requiring hospitalization at Rainbow Babies and Children’s Hospital in Cleveland and flights by medical helicopter. But the fourth-grader at Meadowlawn Elementary hasn’t let the condition change him.

“He’s retained his humor throughout his sickness,” Turner said.

He loves horses, languages and church, and he is extremely neat and smart, his mother said. “He’s really funny. He uses big words really well,” she said.

To his grandpa, he’s a hero. “He’s a warrior and strong,” Higgenbotham said. “Even when he has a tube running in and out of him and bandages wrapped around him.”

That’s why Higgenbotham didn’t let three days of 20-to-30-mph winds and 90-degree heat stop his trip. The rest of Team J includes Jesiah’s stepfather, Nino Turner, and his uncles, Doug Page and Benny Higgenbotham III.

“I’m really proud of my dad,” Bettyna Turner said. “I don’t have the strength or the ability to be an activist. But my dad, my husband, my brother, my brother-in-law, they’re taking that extra time and they’re putting it towards something that means something.”

More info on Hydrocephalus can be found at. www.hydroassoc.org

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