Each year, this fundraiser becomes harder for us to share, but it also reminds us how far Deniro has come. He is turning 19 and finishing his senior year of high school, heading off to college, something we once never imagined for him.
For more than 16 years, we’ve been on this journey, many of you right alongside us, advocating and raising money to support Deniro and others living with Neurofibromatosis Type 1 (NF1).
Deniro’s childhood was filled with uncertainty. From the time of his diagnosis, we lived day by day, facing medical challenges with little to no treatment options available. NF1 is a genetic disorder that causes tumors to grow on nerves throughout the body, often leading to serious complications. In addition, cognitive and developmental delays are common, making NF a complex disorder.
Deniro was born with cognitive and developmental delays and has a plexiform neurofibroma, an inoperable tumor affecting his head, brain, and face. Over the years, he has endured surgeries, setbacks, and we have taken on the emotional weight of the unknown.
He was one of just 24 children in the country to participate in a clinical trial at Dana-Farber Cancer Institute, taking an investigational chemotherapy drug for four years. While the tumor initially shrank, it later regrew, requiring continued treatment.
Today, Deniro remains on the first FDA-approved chemotherapy of its kind to manage his tumor. Thankfully, his most recent MRIs show the tumor remains stable. While this is encouraging, the reality is that his condition is lifelong, and new challenges can occur at any moment.
Because of advancements in research and the support we’ve received along the way, Deniro has a path forward that didn’t exist when he was first diagnosed. We truly believe that your generosity has played a part in making that possible.
As we continue this mission, we kindly ask for your support in Deniro’s honor. Your kindness and generosity have made this journey more hopeful than we ever imagined.
With gratitude,
Dean and Jessica