By EMMA BARTLETT
When Cranston’s Dana Ventetuolo, 48, decided to start the nonprofit Nico’s Tree in 2016, she was looking to provide emotional and financial support to patients and families who were undergoing treatment for long term pediatric diseases. Dana had recently lost her son – Nico – to a rare illness known as Severe Combined Immunodeficiency (SCID) and recognized that community support helped her through the tough time and she wanted to assist those who were experiencing similar circumstances.
Nico was born in 2013 without a normal functioning immune system – common colds, viruses and infections would be fatal. SCID is a genetic disorder that depletes the immune system and leaves individuals with a high risk of developing an infection. The only cure was a stem cell transplant since – without one – life expectancy would be two years of age. While Nico appeared perfectly normal when he was born, after one year, he had frequent infections that lacked an explanation. After testing, doctors at Hasbro Children’s Hospital determined Nico had SCID, he was sent to Boston Children’s Hospital for treatment.
Nico received a bone marrow transplant and from March to July, Dana spent the majority of her time in Boston by Nico’s side. After the stem cell transplant, Nico returned home with his mom; she said after three months they could tell Nico was doing better so he went in for a second round of treatment. Unfortunately, it did not take and he passed away in 2016.
She said after the initial shock and grief wore off following Nico’s passing, she knew she had to make sense of it all and decided to start a nonprofit to help families get through the hardest time of their lives. Dana said during her time with Nico at the hospital, people reached out to help pay her mortgage, gas bills and groceries. While some of these individuals were friends, others were strangers.
“People who didn’t know me but heard our story,” said Dana, recalling those who generously assisted her and Nico.
Today, the nonprofit assists families during the hospitalization and recovery phases of their journey. The nonprofit offers emergency relief funding, bravery backpacks and mini wishes.
If families need help paying housing costs, utility bills, food and travel expenses and other essential needs during times of hospitalization, Nico’s Tree is there to help through their emergency relief funding. Dana said during the second time of Nico’s treatment in Boston, she had run out of PTO and had to go back to work while trying to support living in Boston to be near to her son.
“I wanted to develop a foundation to support families that go through the same thing and keep them by their bedside and help them sustain gas, food, mortgage,” Dana said.
According to Nico’s Tree’s website, emergency relief funding is “valuable during the critical months following a transplant or chemotherapy as families often cannot participate in everyday life as they once did in order to protect their child from threat of infections or relapse.”
To offer comfort for children while they’re in the hospital, Nico’s Tree gives out bravery backpacks which are personalized chemo-care kits created especially for patients who are about to undergo treatment or hospitalization. Backpacks are uniquely customized for patients and past backpacks have included games like Uno and MadLibs. There may also be some snacks or socks and slippers.
Dana said a patient’s room can become their room for several months so it’s important that the kids make it their own during that time. To create the backpacks, Dana collaborates with “Sew for Love ‘’ which have also made superhero capes for the kids.
Lastly, the nonprofit’s mini wish program is to help brighten the day of a child undergoing treatment. By letting Nico’s Tree know about a wish, the nonprofit will work at getting a grant for it. Dana said that siblings who have donated bone marrow or provided support in another way are eligible for a mini wish.
Dana usually receives requests every couple of months from those in the greater Boston and Rhode Island area. The nonprofit’s most frequent request is financial assistance for a mortgage or rental and Dana is able to work with social workers at Hasbro Children’s Hospital and Boston Children’s Hospital to ensure families get the assistance they need. Dana said during the pandemic the nonprofit saw an increase in the number of families asking for financial assistance.
To accomplish all that they do, Nico’s Tree hosts fundraisers once or twice a year, as well as a golf tournament, trivia and bowling nights. Running the nonprofit is a family and friends endeavor and Dana said the nonprofit has had several student volunteers over the years.
As for the nonprofit’s long term goals, Dana would like to see Nico’s Tree continue to expand. Additionally, she is currently earning a certificate in grief counseling and is hoping to hire a small staff to offer bereavement courses or meetings for parents. Dana said she used grief counseling.
“It made such a difference and it just helped me heal,” Dana said.
Born and raised in Johnston, Dana now lives in Cranston near Oaklawn Village. She has worked at Kent County Hospital for the past 16 years as an emergency room nurse. To learn more about Nico’s Tree, visit https://www.nicostree.org.