'There has to be a better way.' Hydro Warriors take aim at neurological condition

CANANDAIGUA, NY — In the last three months, Annie DeBoover, age 2 ½, Hudson McNabb, 1, and Abi Freisen, 8, have all been in the hospital for one reason or another relating to a condition each of them has.

Hydrocephalus, which hits about 1 million Americans a year, is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid within cavities of the brain called ventricles, resulting in pressure on the brain. Patients undergo brain surgeries — for some, the surgeries number in the hundreds — in which a medical device called a shunt, which drains the excess fluid, is inserted.

To date, no one can prevent hydrocephalus and there is no cure.

The condition wreaks havoc on the lives of not only those who have it, but their families as well, according to Audrey DeBoover, "Wild" Annie’s mother, as the little girl is nicknamed.

“We’ve all struggled with the same stress and just the unknowns and trials and tribulations that come with it,” DeBoover said.

But, they are doing what they can to help.

The families are planning the Hydro Hoopla fundraiser from 11 a.m. to 4 p.m. Saturday, Sept. 3, in the outdoor tent at Star Cider, 3365 state Route 364, Canandaigua.

Their Hydro Warriors will be there — Annie, Hudson and Abi — as well as their siblings and family members who are helping with the fundraising event to raise awareness and funding for a cure.

“There is still a lot more to be done,” DeBoover said. “There’s really nothing we can do to be proactive about our kids’ condition and there’s nothing we're in control of so I think as moms, this is the one thing we can proactively do to help our kids’ future. This is our way to contribute.”

The families met after last year’s fundraiser at Star Cider, during the Western New York Hydrocephalus Association Walk in Buffalo at which a record amount of money was raised, DeBoover said.

“We went all the way to Buffalo to meet someone who’s right around the corner," DeBoover said.

Now knowing that support is close by is helpful.

Jess and John McNabb's son was diagnosed early on in her pregnancy. His first shunt surgery came when he was 5 weeks old, earlier than his parents expected.

"After surgery, he was a different kid. I’ll never forget him looking around as if he could see for the first time," Jess McNabb said. "It's scary. Every time he throws up or every time he’s quiet, we have to be thinking, could it be shunt failure?"

There is reason for concern. The two-year shunt failure rate is 40 to 50% in children. Between the three kids, they have had five brain surgeries collectively so far in their young lives. Fortunately, in Annie’s case, she’s had no surgeries in the last year.

But that doesn’t mean the worry goes away. When a child gets sick, a mom’s first inclination may be to believe it’s a bug.

“Our first thought is, do we need brain surgery?” DeBoover said. “It’s a good source of support for mothers to be so close by and know what each other is going through. In the early stages, you feel alone. It’s been really nice to have their understanding and their support and just join in as families and do this. That’s really nice.”

McNabb, for one, acknowledges that DeBoover is the first person she calls when she has questions or concerns about Hudson, because she's been there, done that with Annie.

"When he was diagnosed, we had never heard of it – nobody around us had ever heard of it," McNabb said. "We felt very alone and helpless."

Now, they're all on a mission to raise awareness.

The local event will include kid water games with prizes, build-your-own flower bouquet, lemonade stand, ice cream bar, face painting and raffle.

Each of the kids and their siblings have their own signature outlet for raising money. For example, Carter McNabb, 6, raised almost $1,500 from his lemonade stand this summer to help the cause for his little brother.

“It’s really important for us as parents to have it really just revolve around the family. It’s something that affects the whole family," DeBoover said. “We just want everyone to feel very included and very involved. Rather than it be about Annie or one of the kids, we like it to be about hydrocephalus because it’s hard on the siblings. It’s about the condition and all the people it affects.”

They're also hoping that awareness leads to a cure. Because shunts can fail, many people undergo multiple brain surgeries. The surgeries save lives, but the fear of failure remains.

"There has to be a better way," McNabb said.

All proceeds will be donated to the Hydrocephalus Association at https://www.hydroassoc.org/.

This article originally appeared on Rochester Democrat and Chronicle: Hydrocephalus awareness, cure focus of fundraiser in Canandaigua NY