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Jessica Musone's family members were elated and devastated when they found a doctor in New York City who would operate on the tumor on the 13-year-old's face. They were thrilled to find someone to take on the delicate operation. They were upset because the surgery was deemed cosmetic and their health insurer wouldn't cover about $25,000 in costs. The Syracuse family couldn't even afford the $250 initial doctor visit until Charity for Children stepped in. "They paid for our first visit with the doctors and got the ball rolling," said Jessica's mother, Tammy Musone. "Without the charity we never would have done it. Financially, it was just too expensive."

Charity for Children is a nonprofit group that financially assists Central New York families of chronically ill children, said Nina Albino, executive director. "No matter how much money you make, you never have enough money to meet the needs with chronically ill children," she said. "The idea behind it was to provide help to those that fell through the cracks." The organization has helped more than 20 families since it began in March 2004, she said. In late November, it moved into a bigger office space in Cicero, which was donated by the Syracuse Federal Credit Union. The first year, the group raised about $70,000. The second year it raised about $100,000, and this year it hopes to bring in about $150,000. "If we can raise $150,000 a year, that's like a million to a national organization," Albino said The charity provides families with money for expenses that insurance companies don't think to cover, she said.

They have included rent, car repair, helping to buy a van and dental surgery. "We do things that not a lot of organizations do and fill in the gap," she said. And, she added, "We wanted the money to stay in Central New York." Mark Clauss, a pediatric social worker for University Hospital, said he has referred families to Charity for Children. He said there are a lot of resources for children, but few cover living expenses. "In my work here at the hospital a big part of my job is making appropriate referrals to connect families who have a chronically ill child to the most appropriate services," he said. "The number of organizations that I can think of that accomplish this are not even a handful, and Charity for Children is one of those. "With the number of newly diagnosed kids I run into, I could probably deplete Nina's resources," he said. The Musones heard of Charity for Children through word-of-mouth after other charities were unable to help them. Jessica, who has the genetic disorder neurofibromatosis, has health insurance through her father's employer, PCI on Thompson Road, Tammy Musone said. A PCI representative told The Post-Standard that "all employee matters are strictly confidential" and the company would not comment on Jessica's case. Tammy said she was told the company would pay for Jessica's hospital stay, which will cost about $25,000, but not the surgery, which costs an additional $25,000. The family raised $14,000 through a spaghetti dinner fundraiser and a loan from Jessica's grandparents, Tammy Musone said. The remaining $11,000 is due before a second surgery, Feb. 5.

Charity for Children would like to help more, but it doesn't have that kind of money, Albino said. "The money will come by the grace of God, I hope," Tammy Musone said. Jessica, an eighth-grader at Grant Middle School who will attend Henninger High School in the fall, is excited about the surgery. "I think it's going to be good. I can live my life like a normal kid and be less made fun of in high school and stuff," she said. "I think it's really great. They've (CFC) helped us a lot. They should be getting discovered by more people that need help." Michelle Kisselstein, of Central Square, agrees. "I'd highly recommend Nina," she said. In 2003, Jordyn, the third of the Kisselsteins' children, was born with a deformity of the outer and inner ear. "She hears with a hearing aid," her mother said. "She can hear some without the hearing aid if you speak a little louder." When Jordyn's hearing aid broke in October, Michelle wondered where she would come up with the $900 to buy a new one. Charity for Children stepped in and offered to pay. Fortunately, a warranty paid $200 to have the hearing aid fixed.

Charity for Children is helping the Kisselsteins get Jordyn to a specialist in California this summer to have her outer ears reconstructed, Michelle said. The charity may help with bills such as for airfare, the hotel and the hospital, she said. Michelle is unsure what, if anything, insurance will cover. "She's my angel," she said of Albino. "For the last three years, all I've done is cry, and I'm to the point where now I have someone with me battling the same fight."
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P.O. Box 204 • Syracuse, New York 13206 • 315-234-1443

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