We are the parents of Denise Ingui and the founders of Rare is Beautiful. Our daughter was diagnosed with Peutz-Jeghers Syndrome(PJS) in June 2015. PJS is a rare genetic disease which affects the STK11/LKB1 gene that suppresses tumor growth throughout the body. As a result, cancer risk is multiplied considerably without proper monitoring and surveillance. PJS affects as few as 1 in 300,000 people, but it goes undiagnosed often.
Denise was the typical fourteen year old girl until April 10, 2015 when a serious stomach ache led to an emergency hospital visit and major surgery. The surgery involved the removal of nearly three feet of small intestine resulting from a blockage caused by a large tumor. Denise recovered from her surgery slowly and we thought when the pathology report provided a benign result she was in the clear. We had no idea Denise’s long road was just beginning. She was diagnosed with PJS after genetic testing revealed there was a deletion in her STK11/LKB1 gene. Since then, Denise has been through several tests and procedures. Several
dozen polyps have been removed from her intestinal tract. Monitoring and surveillance will continue forever. The year 2020 brought not only COVID-19 to all of us, but also breast cancer and a double mastectomy and re-construction for our daughter.
In an attempt to find a cure for our daughter’s disease, we have created this non-profit organization. The mission of our foundation is to find a cure and spread awareness of PJS, in addition to helping families with financial needs whose children are already stricken with cancer. Our mission will be made possible through fund raising efforts.
We would like to thank you in advance for giving us the opportunity to share our daughter’s story with you. Tax deductible donations may be sent to Rare is Beautiful, P.O. Box 551 Elmwood Park, NJ 07407 or via venmo @Rare-is-Beautiful. You may also donate through our donate tab above.
Thank you greatly for your consideration and generosity.
Salvatore & Denise Ingui
Rare is Beautiful Founders