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The Ingui family started the Rare is Beautiful foundation after 15-year-old Denise, also known as Dee Dee, was diagnosed with Peutz-Jeghers Syndrome in April 2015. The rare disease affects the gene that suppresses tumor growth, greatly increasing the risk of cancer.
Sal Ingui, Dee Dee's father, said his daughter is doing well now after emergency surgery in April. They since turned their attention to curing the disease and helping others.
"Not that many people know about it and unfortunately anything you read online says it's often undiagnosed," Sal Ingui told Daily Voice. "A lot of other people don't realize they have this disease until it's too late."
The family will host a dinner March 15 at the Brownstone in Paterson to raise awareness and money for finding a cure for the disease.
The Inguis have lived in Elmwood Park for more than 20 years. Dee Dee attends Bergen County Tech School in Teterboro and her father described her as a quiet but normal teen. She likes to read, watch movies, ride her bike, and does well in school, Sal Ingui said.
Dee Dee has another procedure scheduled in February to remove polyps from her intestinal tract. In her original surgery, Dee Dee had three feet of her small intestine removed because of a large tumor.
The support for Rare is Beaitufl has been strong so far from family, friends, schools and businesses, Sal Ingui said, and they hope it continues in March.
TO DONATE: Send contributions to "Rare is Beautiful," PO Box 551, Elmwood Park, NJ, 07407.
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