The Marisa Tufaro Foundation has established a fund at Children’s Hospital of Philadelphia (CHOP), which will be used to assist parents of pediatric patients from Middlesex County who are in medical crisis.
Through a generous donation from our nonprofit in Marisa’s loving memory on what would have been her 16th birthday, families of CHOP patients from Middlesex County will receive 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, which U.S. News & World Report recently ranked second nationally in its 2019-20 Honor Roll of Best Children’s Hospitals.
CHOP, which serves countless patients from Middlesex County, has been ranked among the top children’s hospitals in the United State for 15 consecutive years. No other pediatric hospital in the region has ever been named to the U.S. News & World Report Honor Roll.
Marisa’s father, Greg, a journalist with USA TODAY NETWORK New Jersey, has been privileged over the last two years 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 (short for Lorelai) 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.
In just two years, The Marisa Tufaro Foundation has donated more than $100,000 to help pediatric patients and other children in need throughout the greater Middlesex County area.
Marisa, who was born with hypoplastic left heart syndrome, a cardiac anomaly that required six open-heart surgeries, all of which Dr. J. William Gaynor, surgical director of CHOP’s Heart Failure and Transplant Program, successfully performed, was under the loving care of CHOP Fetal Heart Program and Single Ventricle Survivorship Program director Dr. Jack Rychik, CHOP pediatric cardiologist Dr. Meryl Cohen, CHOP Cardiac Center nurse practitioner Kathryn Dodds, CHOP pediatric neurologist and Neurovascular Imaging Lab director Dr. Daniel Licht and CHOP Child Life Specialist Sherry Polise Hughel.
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 recent 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, such as Marisa’s ophthalmologist, Dr. Lauri Mulvey, 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 CHOP Cardiac Center at Saint Peter’s University Hospital provides a wide range of pediatric cardiac services and tests for families in central and northern New Jersey. Board-certified attending physicians from CHOP work directly with staff at Saint Peter’s to treat children. The team of experts provides comprehensive services to infants, children and young adults with all forms of acquired and congenital heart disease. CHOP Cardiac Center staff care for inpatients at Saint Peter’s neonatal intensive care unit (NICU), pediatric intensive care unit (PICU) and pediatric emergency department. Outpatient and emergency consultations are also available.
The Marisa Tufaro Foundation has been privileged since its inception two years ago to assist multiple families whose children, including some CHOP patients, were or remain in medical crisis.
The newly established fund at CHOP, which Shanna Hocking, CHOP’s associate vice president of individual giving, graciously helped our nonprofit launch, will allow The Marisa Tufaro Foundation to reach a greater number of CHOP families from Middlesex County.
Shanna personally met with Marisa’s parents at CHOP earlier this week. The CHOP Foundation will work in concert with the hospital’s outstanding social workers to ensure funds are 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 this donation serve as a fitting tribute to Marisa’s indomitable spirit while allowing her legacy to be one of helping others.