By Emilee Sousa
“My little trooper,” is what Samantha Pacelli calls her son,
“I call him my ‘Little Trooper’ because he is my rock, my
world, and has taught us to fight through whatever we face with strength,
courage, and faith,” Pacelli said.
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
Pacelli aims to support and console other families dealing with
hydrocephalus. She works at educating these families on their child’s
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,”
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 firstname.lastname@example.org
All of the proceeds are tax deductible and will be donated towards research on
Photos:Samantha Pacelli and Luca. Contributed by Samantha Pacelli
Labels: Pediatric Hydrocephalus Foundation