On August 11th, 2013 I met the most amazing person I will ever know. Born at 12:27 pm on a Sunday, I named him Nico. In those first moments of life, holding him close in my arms, I gazed upon this beautiful brand new tiny person while a rush of hopes, dreams, expectations and plans flooded my head and heart. Who would he become, what would he love to do? One thing I knew for sure, I was in love for the first time in my life. I couldn't wait to discover who Nico was. His journey was about to begin. What no one could have told me at that time was that in just a little over a year from that moment everything that I thought could be possible would change.
Shortly after his 1st birthday, after a series of unexplained illnesses and subsequent hospitalizations, Nico received a diagnosis at Boston Children's Hospital with an extremely rare genetic disorder called Severe Combined Immunodeficiency (SCID). Essentially, Nico was born without a normal, functioning immune system. Common colds, viruses and infections would be fatal. The news was devastating. The only cure for survival was a stem cell transplant. Without one, life expectancy was at best 2 years of age. Our clock was ticking. With a team of the best doctors and medical staff at both Hasbro Children's Hospital and Boston Children's Hospital we began a frightening new and unexpected journey. We held our breath and prayed. In just a short time hope was restored with the news that Nico finally had a donor match. We headed to Boston from Hasbro to begin the long road.
Nico had become very ill over several months of treatment. Exhausted and weak from chemotherapy and surgeries, I was simply astounded by his bravery and resilience. Isolated in a single hospital room for months, undergoing painful procedures and multiple anti-rejection medications he simply never stopped smiling. In the late summer of 2015, Nico and I returned home to RI to begin life again with a second chance and a whole host of new living modifications and rules for life with a brand new immune system. We struggled, but were hopeful. Unfortunately within just one month of returning home Nico was readmitted to Hasbro with what would be the 1st of several post-transplant complications. Nico spent most of the rest of that summer and fall inpatient.
In late November I received crushing news from his doctors in Boston that the transplant was failing. We were told that our only option would be to return to Boston for an attempt at a second transplant. Heartbroken and terrified for my son, once again I held my breath and prayed. I was not ready to give up hope. After constant prayer and with the support from family, friends and an entire community who rallied around Nico and myself we learned that after a second search Nico was matched with another donor. We headed back to Boston. Still weak and exhausted, Nico kept a brave face. I, however, agonized over watching him endure the painful chemotherapy process all over again. It was February of 2016. By March of 2016, just weeks after receiving the second transplant Nico suffered a severe respiratory complication and was transferred to the ICU where he spent weeks on a ventilator fighting for his life. We prayed and held constant vigil at his bedside, unable and unwilling to believe what the medical team was trying to tell us... Nico would be unable to survive.
On April 18th, 2016 Nico lost his courageous fight. It was agonizing to let my beautiful little boy go. As I held Nico for the last time, I felt him slipping away in my arms, along with all of those hopes, dreams and anticipations for his future. All of that passed away in my arms with him. Nico's story, I thought, had ended that night in that cold dark hospital room of the ICU of BCH. I simply could not accept or understand what had happened and why. I had always believed deep in my core that Nico was destined to become someone amazing who would do incredible things. What I could not have realized in those hours, days, weeks and even months following his death was that his journey had not ended at all, it was actually just beginning, only in a way I had never quite expected. Nico had a destiny to fulfill after all. He was going to give his dreams and opportunities to other pediatric patients who had survived treatment. It is my vision that just as a seed is planted to grow, year to year new shoots sprout, and from those shoots branches emerge and those branches eventually become a tree. The tree of dreams and opportunities that we plant with this foundation will grow and flourish too, each surviving patient with a dream becomes another branch of our tree. We call it ''Nico's Tree''.
- Dana Ventetuolo