Foundation Honoring Marisa Tufaro Brings Joy and Assistance to Families with Medical Needs at Rutgers
On the third anniversary of Marisa Tufaro’s untimely passing, Rutgers Robert Wood Johnson Medical School is grateful to work in partnership with an Edison-based nonprofit bearing the inspirational girl’s name.
The Marisa Tufaro Foundation, whose mission is to assist pediatric patients and other children in need throughout the greater Middlesex County area, has made a generous donation to the medical school’s Department of Pediatrics, providing funds for a part-time healthcare social worker to assist families under the care of its Division of Pediatric Cardiology.
Born with a complex cardiac defect that required six open-heart surgeries and ultimately a heart transplant, Marisa Tufaro was under the loving care for her entire life of Joseph Gaffney, MD, associate professor of pediatrics and division director, pediatric cardiology at Robert Wood Johnson Medical School and Bristol-Myers Squibb Children’s Hospital (BMSCH) at Robert Wood Johnson University Hospital (RWJUH), an RWJBarnabas Health facility.
Despite being hospitalized for more than two years and maintaining hundreds of doctor’s appointments, Marisa, who was a well-rounded honor-roll student in elementary and middle school, lived a vibrant life that inspired.
After her sixth open-heart surgery, Marisa developed two life-threatening conditions that necessitated a heart transplant.
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 relentless onslaught of the aggressive disease, which riddled her brain and body, Marisa succumbed to her illness following a valiant battle on January 30, 2017. She was just 13 years old.
Marisa’s parents, Greg and Cyndi, who established The Marisa Tufaro Foundation to keep alive Marisa’s indomitable spirit and to allow her legacy to be one of helping others, expressed a desire to work with the Department of Pediatrics at the medical school in honor of Dr. Gaffney and Maryam Parvez, who was the Tufaro family’s licensed clinical social worker for most of the last year of Marisa’s life.
As an expression of gratitude to 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 and in honor of The Marisa Tufaro Foundation that will allow Marisa’s passion for art to bring joy to other children for years to come.
An exceptional artist whose ambition was to attend an arts college, Marisa took art classes at Rutgers University’s Zimmerli Art Museum, to which she once received a summer art camp scholarship and where her artwork was once showcased in a gallery (her only previous public display was among the hundreds of pictures pediatric patients colored or drew to brighten the hallways of Dr. Gaffney’s outpatient office).
“Marisa was an inspirational girl whose spirit is evident in art she created,” said Dr. Gaffney. “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.”
Rutgers University believes its donors are partners in helping expand and improve its mission of providing excellent patient care, creating new knowledge through innovative research, teaching the next generation of physicians, and educating the community.
As such, the physicians, staff, and students from the medical school’s Department of Pediatrics are committed to partnering with The Marisa Tufaro Foundation on a to-be-determined community program focused on introducing and educating high school students in the field of pediatric medicine.
Through the generous support of school districts and nonpublic schools across Middlesex County, to which the nonprofit is elated to give back via its partnership with the medical school, The Marisa Tufaro Foundation, established exactly two years and six months ago, has already made a profound impact, donating more than $125,000 to assist pediatric patients and other children in need.
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.
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.
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 and at times confusing medical system.
Marisa’s parents are forever indebted to Parvez, without whose expertise and support they would not have been able to navigate an ineffable journey that claimed their beautiful daughter’s life.
Pediatric social workers are a lifeline keeping patients and their families afloat, making it possible to cope with getting treatment. 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.
The Tufaro family valued Parvez – whose area of clinical expertise includes working with adolescents and children with complex medical diagnoses – as a vital member of Marisa’s medical team.
Through their almost daily interactions with Parvez at New York-Presbyterian Morgan Stanley Children’s Hospital at Columbia University Medical Center, where Marisa underwent her successful heart transplant, Cyndi and Greg learned firsthand the invaluable role a social worker can play in the lives of patients and their families
Healthcare 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.
“Words can’t ever 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 healthcare social worker, who we know firsthand can be an invaluable resource to augment expert medical care.”
The Marisa Tufaro Foundation’s donation will allow a social worker for the Department of Pediatrics – who may also aid other pediatric subspecialties such as endocrinology, nephrology, neurology, pulmonary, and rheumatology – to provide for families under the Division of Pediatric Cardiology’s care:
- Emotional support and counseling for patients and families
- Guidance and support in navigating the medical system
- Connections for families with shared illnesses in need of peer support
- Communication to schools and other therapy providers for patients
- Online Rutgers resources to help appropriately direct patients
- Coordinated patient care by communicating with and helping to organize the child’s medical team
- Connections for patients and their families to organizations, programs, and other resources including, but not limited to, child life, chaplaincy, palliative care, psychology, food banks, outpatient therapy, in-home support services, legal aid, and housing
- Communication regarding the status of patients in need of greater support to provider(s)
- Crisis intervention.
Under the expert leadership of Dr. Gaffney, the Children’s Heart Program of New Jersey at the medical school is a center of excellence, providing comprehensive services to infants, children, adolescents and young adults with acquired and congenital heart disease.
In addition, the program has an extensive fetal program to diagnose and manage fetal cardiac abnormalities during pregnancy, providing appropriate treatment, family counseling services and planning strategies for pregnancy, delivery and postnatal care, all services from which Marisa’s family benefited.
Its outpatient office provides evaluations for heart murmurs, palpitations, chest pain and fainting episodes along with other cardiac concerns.
The pediatric cardiology division’s services include fetal, pediatric and young adult echocardiography, EKGs, 24-hour Holter monitoring, transtelephonic cardiac rhythm monitoring, and cardiodynamic exercise testing.
The division oversees the education of the pediatric residents and medical students during their respective pediatric cardiology electives and has a comprehensive review of the pediatric cardiology curriculum for medical students, residents, fellows and nurses.
The pediatric cardiology team is actively involved in hospital education and policy formulation at the BMSCH, participating on multiple hospital and medical school committees.
As a whole, the Department of Pediatrics’ mission is to protect and ensure the health and well-being of all children.
It is dedicated to advancing the field of pediatrics through patient services, research, education, and advocacy, and committed to providing multi-disciplinary family-centered care with respect, compassion and the highest standards of excellence.
The faculty and staff in the Department of Pediatrics conduct clinical, research, educational and outreach activities which directly and indirectly impact the lives of children and their families in central New Jersey, throughout the state and regionally.
The CHINJ houses the Department of Pediatrics’ outpatient subspecialty services and contains a biomedical research institute focused on basic science and translational research in childhood diseases.
The institute affords the opportunity for clinicians and basic scientists to collaborate on research initiatives focused on identifying mechanisms of disease and novel treatments in childhood illnesses.
The Department of Pediatrics’ inpatient clinical services are conducted at the BMSCH, where “kids are our ONLY specialty.”