Girl, 8 months, has been hospitalized most of her life
OLD BRIDGE — Christine and Larry Ciccone were dishing out love along with their famous Italian specialties this weekend at their Italian deli in the Ticetown Square shopping center.
The two decided to sponsor a fundraiser for a special little girl. Ava Loren Barbarino was born in March and diagnosed with three very rare illnesses, CHARGE Syndrome, microgastria and severe combined immunodeficiency (SCID).
Though she is 8 months old, she weighs just 11 pounds. She spent the first five months of her life in the hospital and has had multiple surgeries, the most recent of which was a bone marrow transplant. More surgeries are expected.
Her conditions have caused her to have trouble with hearing and vision. Also, her immune system is compromised and her stomach is very small.
“She’s a beautiful little girl and a real fighter,” Christine Ciccone said. “We are not sure how deaf and blind she is. Her stomach is so tiny she can’t eat too much.”
The Ciccones are big fans of Ava and her parents, Paul and Jessica Barbarino. Paul has a full-time job in New York, but has worked part time at the deli for four years. His wife Jessica taught school in Staten Island, but was not able to return to work since Ava was born. The couple has two other children, Justin, 4, and Gianna, 2.
“They are doing the best they can. He would go from New York right to Philly to be with the baby,” Christine said, noting the high price of gas he faced most of that time.
Not all of Ava’s medical expenses are covered by insurance, and the bills have been piling up.
The Ciccones’ efforts at fundraising started out small and quickly spread.
“First we put out a cup with her photo,” Christine said. Then, Joe Naritato, who owns the adjacent La Dolce Bakery, decided to do the same. So did the nearby Vogue Hair and Nail Salon, owned by Stephanie and Rob Hollenfer. Together they raised $1,900.
But Christine wanted to raise more, and began planning a fundraiser right outside her store. She was thrilled with the generosity of the companies she contacted. Party Perfect volunteered cotton candy and popcorn machines; Boar’s Head donated hot dogs; and Mikey’s Ice Cream individually wrapped ice cream treats.
La Dolce and Vogue also pitched in. The bakery set out tables with their special desserts and the staff of Vogue made cookies. Christine’s mother dressed as a clown and did face painting, and a friend of one of her employees dressed as Elmo and Winnie the Pooh.
“Everything was free, we just asked for donations,” Christine said.
The event was a big success. When she told the Hollenfers they had raised $4,934, they quickly handed over $66 more to make it an even $5,000.
“It was really a community effort,” Christine said.
Ava has a long, tough road ahead of her, so a trust has been set up to help with her medical expenses. Donations can be sent directly to the trust at Ava Loren Barbarino Trust, 48 Rolling Green Hill, Staten Island, NY 10312.
Also, a Web site has been established at http://www.avasangels.org that includes information about her condition and fundraising activity. The Ciccones will also continue to take donations at their deli.