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.