Written by Jill Nossa Friday, 27 July 2012 00:00
When times are tough, throw a party. That was the solution that A.J. Perfetti, 13, came up with four years ago to help raise money for his sister, Julia, who has a rare tumor disorder, and the annual carnival held at their home is becoming a staple of the Glen Cove community – one that raises an average of $5,000 a year.
Julia was diagnosed with neurofibromatosis, or NF, at age four, a life-threatening, progressive condition that causes numerous tumors to grow throughout her entire body, and for which there is no cure or treatment. Her mom, Laura, says she gets migraines roughly three times per week and will soon be on three different medications. Though she remains positive, life is not always easy for the 9-year-old girl, who her mom says often has a lot of anxiety over not feeling well in certain social situations. Holding the carnival is a fun way for the family to raise money for research for Julia’s disease.
Laura and her husband, Anthony, have four children and both work full-time yet somehow find the time and energy to hold various fundraising events throughout the year. Every October, they hold a dinner at the Swan Club for 250 people which Laura says raises around $50,000 a year. To date, the couple has raised nearly $300,000 over the past four years for the Children’s Tumor Foundation.
“I feel like I have no other option, there’s nothing else I can do to improve Julia’s life,” says Laura about her fundraising efforts. “If you’re busy, you always just keep busy and know what you have to do, and get it done.”
For the first carnival held on the Perfetti’s property, A.J. and Anthony built a lot of the stands together. They keep them stored in the garage and reuse them every year. More than 500 people attended this year’s carnival, held on July 14, and $5,007 was raised, according to Laura. She said they had 30 volunteers, mostly students from the middle school and high school, as well as some parents, and she expressed her appreciation for all of their help.
“Not only did a lot of the volunteers donate their time during the carnival but they stayed and helped with cleanup, and then they donated money on top,” Laura said. She said some of the vendors also donated their time and services for no charge, including the deejay, Ryan Ritter, who she said even brought his own prizes to give away to the kids.
“The carnival is a lot of fun and doesn’t really feel like working,” says Laura. “There are really nice kids in the area that come out for this.”