Jackson’s son, Kashawn Stroman, 14, acquired hydrocephalus from a brain tumor. He’s undergone several surgeries to repair and replace a shunt that drains the fluid from his brain.

“When Kashawn was diagnosed, we had no idea what it was,” said Jackson, who is a Town of Binghamton resident.

The mother of three is now organizing a local chapter of the Pediatric Hydrocephalus Foundation, helping to raise money and awareness about the affliction and provide help for those affected by a diagnosis.

“I just thought it was something I wanted to be involved in to help other families, to have a support system for other families,” Jackson said.

Over the past several weeks, fundraisers have been planned and Jackson has reached out to local hospitals and people, sometimes through social media sites. Jackson has even come across people from her past who are also dealing with the condition.

“A friend I grew up with has two daughters with hydrocephalus,” she said.

Most of those affected with hydrocephalus are born with it, said Kim Illions, president and chief executive officer of the Pediatric Hydrocephalus Foundation. One in every 500 babies born has the disease. Others, like Stroman, get it from trauma to the brain, she said, noting that another type of the disease also affects the elderly. The excess fluid, if not drained, places potentially harmful pressure on the brain and can be fatal if left untreated, Illions said, and there is no cure.

Since there is little information out there, it’s vital to get the word out through organizations like the Pediatric Hydrocephalus Foundation, Illions said. The Binghamton chapter will be the fourth in New York, with others in Westchester and Orange counties and Manhattan, she said.

“It’s really important because there are families who have no support whatsoever,” Illions said. “They feel very alone.”