To commemorate what would have been Marisa’s 16th birthday, The Marisa Tufaro Foundation in 2019 established a fund at Children’s Hospital of Philadelphia (CHOP) to assist parents of pediatric patients from Middlesex County who are in medical crisis.
The fund was created to provide families of CHOP patients from the county with financial support through the payment of medical, personal or incidental expenses.
Marisa, who was diagnosed in utero with a severe cardiac defect, received outstanding care throughout her entire life from the staff and physicians at CHOP.
CHOP, which serves countless patients from Middlesex County, is widely regarded among the top children’s hospitals in the world.
Marisa’s father, Greg, a former journalist with USA TODAY NETWORK New Jersey, was privileged throughout his career to report on several brave and inspirational Middlesex County children who, like his daughter, received amazing care at CHOP.
They include Michael Grzankowski of Laurence Harbor, Julie Hildebrand of Colonia, Shane O’Donnell of Middlesex, and Rory and Everett Pepin of Sayreville.
Their collective stories, in part, further inspired Greg and his wife, Cyndi, principal at James Monroe Elementary School in Edison, to fulfill a long desire of giving back to CHOP, a goal that could not have been realized without the outstanding support The Marisa Tufaro Foundation receives from the entire Middlesex County community.
Since its inception in July 2017, The Marisa Tufaro Foundation has donated nearly $300,000 to assist pediatric patients and other children in need throughout the greater Middlesex County area.
Marisa was born with hypoplastic left heart syndrome, a cardiac anomaly that required six open-heart surgeries, all of which Dr. J. William Gaynor, former surgical director of CHOP’s Heart Failure and Transplant Program, successfully performed.
Marisa was also under the loving care of CHOP Fetal Heart Program and Fontan Rehabilitation, Wellness, Activity and Resilience Development (FORWARD) Program Director Dr. Jack Rychik, CHOP pediatric cardiologist Dr. Meryl Cohen, and FORWARD Clinical Program Manager Kathryn Dodds.
Despite being hospitalized for more than two years and maintaining hundreds of doctor’s appointments, Marisa lived a vibrant life that inspired.
Marisa served on CHOP’s Youth Advisory Council, playing a small but vital role through the valued input of herself and her peers in the hospital’s expansion. In addition, Marisa’s image adorned the cover of the CHOP Cardiac Center’s 2011 annual report on its efforts to help and heal. The same year, Marisa’s full-size likeness appeared on a five-foot tall poster, which was displayed in multiple locations throughout the hospital.
As an inpatient, Marisa benefited extensively from CHOP’s Hospital School Program and Child Life Program, which included age-appropriate therapeutic play, art therapy, music therapy and pet therapy. She was afforded the opportunity to serve as a disc jockey inside The Ryan Seacrest Foundation’s interactive closed-circuit broadcast multi-media center, known as THE VOICE and located inside the hospital’s Colket Atrium. She also attended two of CHOP’s annual proms, with each of the amazing events lifting her spirits.
After her sixth surgery, Marisa developed two life-threatening conditions, known as protein losing enteropathy and plastic bronchitis, that necessitated a heart transplant. A postoperative complication developed into a rare form of cancer, which riddled Marisa’s brain and body. Marisa succumbed to her illness following a valiant battle on Jan. 30, 2017. She was just 13 years old.
Marisa benefited from CHOP’s satellite locations. In addition to providing outstanding care on its main campus complex in University City, CHOP’s network has grown to more than 50 locations, including many in New Jersey, where CHOP experts provide exceptional healthcare services to children.
Marisa also benefited from CHOP’s partnership with Saint Peter’s University Hospital in New Brunswick, where her cardiac defect was diagnosed in utero. Marisa had her first open-heart surgery at CHOP a day after she was born.
The Marisa Tufaro Foundation has been privileged since its inception to assist dozens of families whose children, including some CHOP patients, were or remain in medical crisis.
The fund at CHOP enabled The Marisa Tufaro Foundation to reach a greater number of CHOP families from Middlesex County.
The CHOP Foundation worked in concert with the hospital’s outstanding social workers to ensure funds were directed exclusively to Middlesex County families.
Words can’t express our nonprofit’s gratitude for the opportunity to give back to CHOP and for CHOP’s ability to make the fund serve as a fitting tribute to Marisa’s indomitable spirit while allowing her legacy to be one of helping others.