In loving memory of Laney Grace Stoeckel and Marisa Tufaro, The Marisa Tufaro Foundation is commemorating National Congenital Heart Defect Awareness Day with a donation to the CHOP Cardiac Center at Saint Peter’s Children’s Hospital in New Brunswick.
The Marisa Tufaro Foundation, which assists pediatric patients and children in need throughout the greater Middlesex County area, has also made a donation to Team Laney Bug in support of that charity organization’s own mission.
Laney and Marisa were both diagnosed in utero during 20-month ultrasounds at Saint Peter’s with Hypoplastic Left Heart Syndrome (HLHS).
According to the Centers for Disease Control and Prevention, about 960 babies are born annually in the United States with HLHS, a severe defect that leaves the left side of the heart, which receives oxygen-rich blood from the lungs to pump to the rest of the body, underdeveloped.
After undergoing the first and second of what were supposed to be three reconstructive open-heart surgeries and a creative procedure to repair her defect, Laney passed away in October 2020 just days before she was to turn five months old.
Marisa, who survived six open-heart surgeries and a heart transplant before succumbing to a rare form of cancer, died at the age of 13 just over five years ago.
Laney and Marisa had their combined eight open-heart surgeries at Children’s Hospital of Philadelphia (CHOP), one of the world’s leading children’s hospitals and one with which Saint Peter’s has enjoyed a longstanding partnership.
The parents of both girls remain forever indebted to Saint Peter’s for making a diagnosis that enabled safe delivery at a hospital eminently prepared for high-risk babies, and to CHOP for the extraordinary care Laney and Marisa received during their hospitalizations.
In 2019, The Marisa Tufaro Foundation established a fund at CHOP to provide financial support to families of pediatric patients from Middlesex County in medical crisis by helping to pay their medical, personal, or incidental expenses.
Team Laney Bug, established shortly after Laney’s untimely passing, provides support without geographic limitations to families of CHOP cardiac intensive care unit patients in the form of custom-designed plush throw blankets, gift cards and cafeteria vouchers.
“We treasure the blankets we received bedside at CHOP and hope they will comfort the families as they did ours,” said Jen Stoeckel, Laney’s mother. “Helping the families at CHOP in memory of our daughter is something we plan to do annually.”
The Marisa Tufaro Foundation’s donation to Team Laney Bug will be used exclusively for Jen and her husband Dave to provide custom-designed plush throw blankets to pediatric patients at Saint Peter’s.
The Stoeckel family, including Laney’s five siblings, and the community in and around their native South Plainfield have honored Laney’s short life on New Year’s Day each of the past two years with an annual Team Laney Bug fundraising walk. All money raised has and will continue to directly benefit the families of CHOP cardiac intensive care unit patients.
“God bless the Stoeckels for having the courage and strength to honor their beautiful baby girl by establishing a charity that benefits other families with children battling life-threatening cardiac issues,” said Senator Patrick J. Diegnan Jr., a lifelong South Plainfield resident and member of The Marisa Tufaro Foundation’s board of trustees.
Jen and Dave benefited from amazing community support while commuting to Philadelphia to care for Laney at CHOP and returning home to care for their other five children.
“The support we received from our community, our family, and our friends throughout our journey was tremendous and so very much appreciated,” Jen said. “We never had to worry about dinner being on the table or whether there was someone to bring the kids to practice or games, or just to stay with them while we were away. The food, gift cards, gift baskets, flowers, text messages, phone calls, donations to CHOP, and everything in between were overwhelming and greatly appreciated.”
Jen and Dave said they are grateful to live in South Plainfield “with such amazing families and the best schools and organizations around.”
Donations for the Stoeckels during Laney’s hospitalization and following her untimely passing for Team Laney Bug flowed from borough families, recreation sports programs, police, schools, clubs, and other organizations.
“Although we were hoping for a different outcome, they helped us get through what we only hope to be the most difficult time of our lives,” Jen said. “We are so blessed that Laney’s life, although short, has left a lasting impression on so many. Our entire family is so grateful for all the love and support.”
Dave Stoeckel, who coaches youth wrestling in the borough, where the sport borders on religion, opted to forgo practice earlier this year on Jan. 21, instead bringing his team to the fifth annual Marisa Tufaro Memorial Dual at South Plainfield High School.
The event, which honors Marisa and benefits the foundation bearing her name, serves as a fundraiser for the nonprofit.
Dave, a South Plainfield alumnus who wrestled for the high school, wanted his young grapplers to watch his alma mater compete that night against Old Bridge, as well as support The Marisa Tufaro Foundation.
Marisa’s parents, Cyndi and Greg, who were previously unfamiliar with the Stoeckel family’s plight and their beautiful daughter’s valiant battle, were moved by Dave’s gesture.
“We have the utmost respect for the Stoeckel family and the South Plainfield community,” Cyndi said. “We wanted to somehow honor Laney’s memory, and this donation on National Congenital Heart Defect Awareness Day seemed like a fitting tribute.”
The Marisa Tufaro Foundation’s donation to the CHOP Cardiac Center at Saint Peter’s Children’s Hospital will benefit pediatric patients, who receive treatment from board-certified pediatric cardiologists, nurse clinicians and cardiac technologists. The center offers comprehensive services for infants, children, and young adults with all forms of acquired and congenital heart disease as well as electrical disorders of the heart. Conditions treated at the center include heart murmurs, congestive heart failure, rheumatic fever, Kawasaki disease and arrhythmias. The CHOP Cardiac Center staff cares for patients throughout the hospital, including in Saint Peter’s renowned Neonatal Intensive Care Unit, Pediatric Intensive Care Unit, and Pediatric Emergency Department. The Center also coordinates advanced cardiology and cardiothoracic surgical services with CHOP, considered the premier pediatric hospital in the country.
National Cardiac Defect Awareness Day, recognized annually on Feb. 14, promotes awareness and education about congenital heart defects, with which 40,000 babies are born nationwide each year. The annual campaign honors and remembers everyone born with a heart defect, all who cardiac defects impact, and the medical professionals who care for those born with such anomalies.
Laney was born in May 2020 in the Special Delivery Unit at CHOP. With COVID protocols in place at the hospital amid the pandemic, Laney’s sister and four brothers never got to meet her in person.
“We would like to show our children that Laney’s life, although short on earth, has changed lives,” Jen said. “We miss Laney so much but are confident that her contributions to this world will continue to be remembered.”