NICK D'ANTILIO
a site dedicated to the amazing life of
Nicholas (Nick) D'Antilio.
Nick touched so many lives in a positive way.
research and resources.
and how you can help.
nicks challenges
There are three unique challenges Nicholas faced when he was sick. And it is these three challenges that any money donated to Nick's fund at Dana Farber will go towards.
MDS. The first is the disease Nick had. MDS. MDS is a type of blood cancer, similar in many ways and often a precurser to leukemia. However, MDS most commonly affects people 70 years and older. At 20 years old, Nicks was a rare case.
TP53 GENE MUTATION. Another challenge Nick faced was that he had a mutation of what is known as the TP53 gene. This gene is a "Tumor Suppressor" gene and it's job is to suppress cancer spread and tumor growth. It's known as the "cancer protection" gene and everyone has two. But due to Nick's mutation of this gene it could not do it's job and help to suppress the MDS or allow treatements to gain any traction.
The odds of someone Nick's age having MDS are rare. The odds of someone Nick's age having MDS and a mutation of the TP53 gene are even more rare. It's a 4 in 1 million chance.
CARE FOR YOUNG ADULTS. The third challenge Nick and his family faced was that because he was 20 years old he could not be admitted or cared for at a Children's Hospital. While no one wants their child to be in the hospital for any reason, one of the advantages of a children's hospital, such as Boston Children's Hospital, is that there is a sense of community, and a strong emphasis on the inclusiveness of family and friends in the care of the patients. Kids with the same or similar diseases can socialize and support one another. There are more accomodations for family who want to stay at the hospital and for visitors to lift spirits. To be clear, the medical care Nick received was outstanding. The doctors and nurses and other staff did an amazing job. But, even they said this is a much discussed and much needed area where a gap needs filling. Namely the care of young people between the ages of around 18-29. They aren't children but they're of an age where the social support, family support and the overall "holistic care" that a children's hospital would provide is much needed.
resources
To learn more about MDS and where the curernt research stands:
To learn more about TP53 gene mutation and where the current research stands on that:
TP53 Mutations in Human Cancer
To learn more about the unique challenges faced by young adults with cancer and their families and some options for assistance:
Adolecents and Young Adults with Blood Cancer
The Unique Hell of Getting Cancer as a Young Adult
Special Issues for Young Adults With Cancer
Scholarships for Young Adults with Blood Cancer
Northwestern Mutual Childhood Cancer Sibling Scholarship
Programs and Resources to Help With Cancer-related Expenses
Dana Farber Resources for Young Adults with Cancer
Young Adults | Leukemia and Lymphoma Society
How Can You Help?
one: donate to Nick's Fund
Please consider donating to the Nicholas P. D'Antilio Fund for MDS/AML TP53 to support research for a cure.
two: donate blood, platelets, or stem cells
BLOOD DONATION. Blood donation is always needed.
What's involved: It's pretty straightforward. If you've ever had blood drawn at your doctors for any reason, it's exactly the same.
To donate blood:
PLATLET DONATION. Platlet donation is extremely important as platelets or plasma prevent excessive bleeding.
What's involved: It's a different process than just normal blood donation. While very safe and non-invasive, it's a three hour process using both arms. Blood is drawn into a machine where it is spun in order to seperate out the platelets, then the rest of your blood is returned back to you.
To learn more about the process please see this section of the Red Cross website.
To donate platlets:
The Kraft Family Blood Donor Center at Dana Farber
STEM CELL DONATION. Stem cell donation is possibly the most important for blood cancer patients.
Every year, 18,000 patients are diagnosed with life-threatening blood cancers or other blood disorders that could be cured or treated with a blood stem cell transplant. But 70% of them don't have a fully matched donor in their family. They depend on NMDP℠ to find an unrelated donor.
Your healthy blood stem cells may be a patient's best or only hope for a cure.
If you are in good health, between the ages of 18 and 40, and would like to become a potential donor you can follow these steps:
step one: Register online at the National Marrow Donor Program (NMDP) website
step two: Swab or screening so you can be matched with patients in need. This screening, known as HLA Typing, is easy and takes just minutes. Your name and HLA type are then registered in the National Marrow Donor Program database.
step three: Get matched. Because of the genetic complexity of matching donors to patients, it could be a few months or many years before you’re matched to a patient.
step four: donate. It's a procedure but not a surgery. You can donate at many cancer hospitals.
To learn more about the process please see this section of The Kraft Fmaily Blood Donor Center website as well as the aformentioned National Marrow Donor Program (NMDP) website.