FAIRFIELD, Conn. – For the past four months, Sally Fulcher of Fairfield has been training to run her first half-marathon this Sunday. But her goal goes beyond tackling the 13.1-mile course: She is seeking to raise awareness for an incurable disease affecting her friend’s young daughter.

For Cindy Shanley, the past year has been filled with doctor’s visits, hospital stays and a constant awareness of the brain disorder hydrocephalus, which afflicts her 20-month-old daughter, Reagan.

The painful condition causes an abnormal amount of spinal fluid to build, widening spaces in the brain. It can cause increased pressure inside the skull and progressive enlargement of the head as well as other problems. It can be fatal.

“There is no cure for this,” Shanley said. The only treatment is surgical, to release the fluid built up in the brain. Even at her young age, Reagan, she said, has already had two surgeries to reduce the amount of fluid in her brain.

Some children are born with hydrocephalus and others develop it. The condition is most common in infants and affects nearly one in every 500 births. Reagan seems to have developed the problem.

“What Sally is doing is to raise awareness.” Shanley said. She and her family are grateful for the time and effort that Fulcher is putting in to help their cause.

Always a runner, Fulcher said she has not done any long-distance runs since having children and has never run far as a half-marathon.

But having the motivation to raise money for awareness and research for her friend’s second child pushed her into running the Stratton Faxon Fairfield Half, which benefits the Pediatric Hydrocephalus Foundation.

“I knew this was a great cause,” Fulcher said. Before Reagan was diagnosed, she said she had no idea that the condition even existed.

“This is the longest I’ve ever run,” Fulcher said. “And it’s a pretty hilly course.”

But she’s hoping the weather will be on her side Sunday and won’t be too hot as she hits the course.

So far, Fulcher’s donation page has raised over $4,800, nearly double her initial goal. Donations can still be made online.

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More than 4,000 runners are expected to participate in the 34th Stratton Faxon Fairfield half marathon on June 22 and there are probably that many reasons why they do it.

Some of the top runners, like the Kenyans, run for the prize money while others do it for more personal aspirations.

Southport resident Sally Fulcher, who will be taking part in her first half marathon in two weeks, falls into the latter category.

She is running the Fairfield race in honor of her friend Cindy Shanley’s 20-month-old daughter Reagan, who has an incurable brain condition known as Hydrocephalus.

“I decided to run the Stratton Faxon Fairfield half to raise some money for a wonderful cause very close to my heart,” Fulcher said. “When Reagan was first diagnosed with this disease, I remember thinking I’d never even heard of it, which is part of the problem, and I hope to change that.”

Fulcher has set up a website for friends and family to help support her mission at www.active.com/donate/runsallyrun and already has raised more than $2,000.

Occurring in approximately one of every 500 births, Hydrocephalus is a condition in which excessive cerebral spinal fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues.

Since there hasn’t been a lot of advancements in treatment, many affected with the disease are unable to lead productive lives.

Hydrocephalus is the leading cause for pediatric brain surgery in the United States and can be fatal if left untreated.

Fulcher has done short races for years and ran some 5K and 10K events when she lived in England.

However, her last official race was the JP Morgan Chase Challenge four years ago before she had kids.

Including the 5K race (June 21 at 8:15 a.m.) , which generally attracts in excess of 1,000 runners, more than 5,000 people will hit Jennings Beach for one of the top half marathons in New England.

The half marathon will begin 15 minutes earlier this year with an 8:15 a.m. start.

Kenyans took the top-three spots last year led by Eric Chirchir, who finished with a winning time of 1:05.58, a pace of just over five minutes per mile.

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Luca Pacelli was diagnosed shortly after birth with a rare brain condition, called hydrocephalus.

“Hydrocephalus is a lifelong brain condition where cerebral fluid builds up in the brain, typically in young children, enlarging the head and sometimes causing brain damage,” said Pacelli.

1 in 500 newborns are born with this brain condition.
Luca underwent two brain surgeries only weeks after birth, including endoscopic third ventricolostomy surgery and a VP shunt placement, his mother said.

While Luca was undergoing surgery, Pacelli looked for support groups to reach out to in Connecticut and found none.

“I look back at this horrible time in our lives and realized I didn’t have a clue as to what the doctors were diagnosing my son with,” said Pacelli. “I didn’t realize this would be a lifelong condition. I looked for support groups in Connecticut and there was not one.”

Many other families have faced the same struggle as the Pacelli’s does, and when searching for support groups, have come up short as well.

Pacelli, now Connecticut state director of the PediatricHydrocephalus Foundation, has worked hard to change this.
Pacelli aims to support and console other families dealing with hydrocephalus. She works at educating these families on their child’s condition.

As a part of her work to support families with hydrocephalus, Pacelli organized the First Annual PHF Golf Tournament.

Pacelli is holding the PHF Golf Tournament to raise awareness and raise money towards research for curing hydrocephalus.

“You never know when your kids going to need another brain surgery and that’s what my whole thing is, there has got to be another way,” said Pacelli.

Pacelli is asking for “In Kind” donations and sponsors. Sponsors include raffle goods, tee and putting sponsors, breakfast sponsor, players, and small monetary donations.

The PHF Connecticut State Chapter First Annual Golf Tournament is being held July 10 at Lyman Orchards Golf Club. It is located in Middlefield, at 70 Lyman Road.

It is $165 per player fee, which includes green fees, cart, luncheon with beer and wine. For non-golfers, there is a luncheon-only option, costing $50 per person.

For more information on registration and sponsorship, contact Pacelli at (203) 710 1031 or at hydrocephhope@aol.com.

All of the proceeds are tax deductible and will be donated towards research on this condition.