NICK D'ANTILIO
a site dedicated to the amazing life of
Nicholas (Nick) D'Antilio.
Nick touched so many lives in a positive way.
Sadly on Monday, May 6th, 2024, our beloved son and brother, Nick passed away after a courageous battle with MDS/Leukemia due to a rare TP53 gene mutation.
Always thinking of others, Nick asked us to “please help find a cure” and we intend do everything we can to help do that.
While the medical professionals were amazing, Nick encountered three significant challenges which we hope to adress:
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One, there is no early scanning for this type of disease,
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Two, there is currently no cure or standard treatment for this disease combination (meaning someone with MDS and a mutation of the TP53 gene -- which is a tumor suppressor gene) and,
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Three, there is a gap in holistic care including support for young adults.
This website is dedicated to Nick, and his life, with a goal of helping further education, research, and most importantly, finding a cure for MDS and Leukemia with a TP53 gene mutation.
Please see below to donate to the Nicholas P. D’Antilio Fund for MDS/AML TP53 Research at Dana Farber Cancer Institute.
We’ve also established a scholarship at URI to help support education for students interested in environmental and animal sciences and who have also demonstrated kindness and friendship in their lives as Nick had always done.
DONATE TO NICK'S FUND
My Story
Nick was a very healthy 20-year-old college student who had just returned to the University of Rhode Island (URI) to begin his junior year when he began feeling fatigued and unwell. Nick had not experienced any symptoms prior to this and had always been healthy. In fact, he had just spent the summer travelling with our family and swimming, kayaking, and walking with family and friends. He had also been going to the gym regularly and was a lifeguard at the local YMCA.
In his first week back on campus, while taking the lifeguard test at URI, he realized he could not complete the swim, and sent us a text wondering why his stamina had eroded so quickly. Then on Monday September 11th, 2023, Nick went to the URI campus clinic and reported feeling lightheaded and unwell. He was quickly sent to South County Hospital in Kingston, RI where they determined he was severely anemic and required blood and after a blood infusion, he was sent to Dana Farber/Brigham & Women’s Hospital in Boston via ambulance.
At Dana Farber they performed a series of blood tests and did a biopsy. Within days, the team at Dana Farber determined that he had Myelodysplasia Syndrome or MDS. MDS are a group of cancers in which immature blood cells in the bone marrow do not mature or become healthy blood cells. We had never even heard of MDS and, the chance of getting MDS in a young adult is rare and even rarer with a mutation of the TP53 (tumor suppressor) gene. Unfortunately, this disease combination also has a very poor prognosis in young adults.
Nick came home two days later and felt fairly good, but the disease progressed quickly as the combination of MDS/TP53 gene mutation is particularly aggressive in young adults. Nick began a series of bi-weekly visits to the Dana Farber clinic and had several extended inpatient hospital stays due to high fevers (neutropenic fevers) and eventually two stem cell or bone marrow transplants. While a stem cell transplant is the only possible cure for MDS, it also requires heavy doses of chemotherapy to eliminate the disease.
A second transplant was initially successful, and Nick left the hospital after a grueling 77-day inpatient stay during which he was only able to go home for 2 afternoons. However, due to the aggressive nature of this disease in young adults, it relapsed within a month and Nick’s health rapidly deteriorated. The disease began to impact his kidneys and required an extended hospital stay in April of 2024. Sadly on Monday, May 6th, 2024, our beloved son and brother, Nick passed away after a courageous battle with MDS/Leukemia due to this rare TP53 gene mutation.
NICKS URI SCHOLARSHIP
Funds will go towards research specific to MDS/Leukemia with rare TP53 gene as well as improving the holistic care model that young adults (ages 18-29) who have this and other types of cancers receive.
A scholarship has been setup in Nick's name at his beloved alma mater The University of Rhode Island for students in or applying to the School of Environmental and Life Sciences.