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But the transplant, which was supposed to extend Marisa’s life, tragically cut it short when a postoperative complication developed into a rare form of cancer known as post-transplant lymphoproliferative disorder. After radiation and chemotherapy treatments failed to thwart the aggressive disease, Marisa succumbed to her illness on Jan. 30, 2017.
She was just 13 years old.
Marisa’s parents, Greg and Cyndi, both Rutgers alumni, established The Marisa Tufaro Foundation to honor their daughter while assisting pediatric patients and other children in need in Middlesex County. On the third anniversary of Marisa’s death, the nonprofit that bears her name made a donation to Rutgers Robert Wood Johnson Medical School’s Department of Pediatrics that will go toward hiring a part-time health care social worker to assist families under the care of its Division of Pediatric Cardiology.
Families of children with serious medical conditions often experience intense hardships that can negatively impact their mental, emotional, social and financial well-being. They may also have difficulty advocating for themselves and their child in a complex medical system. The Tufaros said they are forever indebted to Maryam Parvez, the licensed clinical social worker at New York-Presbyterian Morgan Stanley Children’s Hospital at Columbia University Medical Center where Marisa underwent her heart transplant. Through their almost daily interactions with Parvez during the last year of Marisa’s life, Cyndi and Greg learned the vital role a social worker can play in the lives of young patients and their families.
“Words can never convey our gratitude to Rutgers University and Robert Wood Johnson Medical School for affording us, as parents, an opportunity to give back – albeit in a small way – to the outstanding medical community that provided Marisa with exceptional love and care throughout her life,” Cyndi Tufaro said. “Our hope is that the families who benefit from the expertise and compassion of the Department of Pediatrics’ Division of Pediatric Cardiology will similarly benefit from the support of a health care social worker, who we know firsthand can be an invaluable resource to augment expert medical care.”
Health care social workers make it possible to trust that – at a time when people may feel their most vulnerable – they have an advocate to give them hope and direction. They provide an array of services to assist families including, but not limited to, individual and group counseling, guidance in applying for insurance and other benefits, connections to community resources and support systems, crisis interventions, and facilitating effective communication between patients, families and the larger medical team.
“Our hope is that the families who benefit from the expertise and compassion of the Department of Pediatrics’ Division of Pediatric Cardiology will similarly benefit from the support of a health care social worker, who we know firsthand can be an invaluable resource to augment expert medical care.” – Cyndi Tufaro
To thank the foundation for its donation, the Division of Pediatric Cardiology will dedicate a space within the pediatric medical practice at the Child Health Institute of New Jersey in memory of Marisa that will allow her passion for art to bring joy to other children for years to come. The space will be used to display pediatric patients’ artwork.
An exceptional young artist whose ambition was to attend art school, Marisa took classes at Rutgers-New Brunswick’s Zimmerli Art Museum, where her artwork was once showcased.
“Marisa was an inspirational girl whose spirit is evident in art she created,” said Gaffney, whose walls were also adorned with Marisa’s artwork. “We are truly appreciative for the support of The Marisa Tufaro Foundation and working with them to share Marisa’s love of art with all of our pediatric patients.”
The Marisa Tufaro Foundation has assisted multiple families whose children are in medical crisis, providing financial support through the payment of medical and/or personal expenses to help lessen the burden of parents who have lost wages while spending time at the hospital or providing care at home. The foundation, which makes community service an integral part of its mission, has also spearheaded multiple initiatives resulting in the collection of thousands of toys, nonperishable food items, winter coats, baby supplies and other items for donation upon which the nonprofit has placed no monetary value.
Through the support of school districts and nonpublic schools across Middlesex County, The Marisa Tufaro Foundation has donated more than $125,000 to assist pediatric patients and other children in need.