A community is coming together to raise both funds and awareness for a rare disease.
Bay Ridge’s No Quarter Tavern, 8015 Fifth Avenue, will play host to the second annual Cri Du Chat Syndrome benefit. The event, which takes place on Saturday, May 9, will be in honor of Giovanna Tiralongo, an eight-year-old girl who was diagnosed with the illness when she was just 15 months old.
The event is sponsored by Five P Minus Society, a parent support group for families dealing with Cri Du Chat Syndrome, a chromosomal condition that results when a piece of chromosome 5 is missing. Also known as 5p- Syndrome, the disease is characterized at birth by a high pitched cry, low birth weight, poor muscle tone and microcephaly, among other things.
Giovanna’s condition was discovered after her father Joseph, who is a board member for Five P, noticed differences in her behavior and after internet research, decided to have her tested. She was then diagnosed with the disease which occurs in an estimated one in 20,000 to 50,000 newborns.
“When it happens, it feels like your world is crashing down,” Tiralongo said. “ When you take your child home, it can be overwhelming.”
The organization holds an annual conference at which families and their children gather to discuss and cope with the illness. “It’s so rewarding, more so for the kids,” Tiralongo explained. “When we get together once a year for these forums, they remember each other and they’re so happy to be back during that weekend. They look forward to it all year. It’s like a family reunion. The kids look forward to it more than we do. It’s amazing to see them realize their potential.”
Giovanna currently attends United Cerebral Palsy (UCP) Developmental Evaluation Services near Ocean Parkway. “She’s a happy kid. She currently uses sign language to communicate,” said Joseph. “She loves her iPad and uses it to watch YouTube to listen to different languages. She also loves playing with the sand on the beach.”
Along with the fundraising aspect of the event, which starts at 5 p.m., it’s also a time for the community to learn about the illness. “It’s to raise awareness and to reassure each other that they can still enjoy their lives,” Tiralongo said. “We get support from local politicians, the community, police, family, friends, everyone comes and shows their support. It’s great.”
There is a $20 door donation. “Everything collected from the event will go to the Five P Minus Society,” said Tiralongo. “We’ll be doing raffles, local businesses will donate food. There will be music. We’re all looking forward to it.
To learn more about Cri Du Chat Syndrome, visit www.fivepminus.org.