On December 6, 2002, Dhillon Jordan Shah was born a brown-haired, brown-eyed, pink-cheeked baby boy. He came home, but a few days later, was rushed back to the emergency room at UNC Hospitals where he was diagnosed with hypoplastic left heart syndrome.

Surrounded by his family’s love and hope, Dhillon’s imperfect—but mighty—heart underwent what would become the first of many surgeries. In the waiting room, Bev Foster sat vigil not as associate professor and director of the UNC-Chapel Hill undergraduate nursing program, but as Dhillon’s maternal grandmother. After his surgery, she and her family began a journey rich with bravery, joy and bold purpose until Dhillon’s death on July 23, 2015 from complications of a heart transplant.

In memory of his journey, in honor of his life and in appreciation for the medical professionals who cared for him, Foster established “Dhillon’s Gift,” an endowment to encourage and support students, post-graduates and practitioners working on pilot endeavors in the field of congenital heart defects. Annual awards will be made to students and practitioners affiliated with of one of the three world-class medical centers where Dhillon was treated: UNC Health Care; the University of Michigan Health System; and the Children’s Hospital of Philadelphia.

The endowment is only part of Dhillon’s legacy.

“Gayle Davis (now retired) invited me to make a presentation to her students from the family’s experience of having a critically ill child,” Foster said. “I told her I can speak from my heart or I can be clinical, but it would be hard to do both; we agreed my focus would be from the heart. It’s important because students see patients one shift at a time or one hospitalization at a time: it’s quite unusual for nurses to see the continuum of care across years of coping with a chronic disease. I made the presentation twice a year, updated it each time and it became—as I wanted it to—a story of Dhillon’s journey. When Dhillon was older he’d ask me why the nurses would be interested in his story. I said it was so they could be better nurses when they took care of kids with conditions like his. It made complete sense to him because he knew how critical the nurses and doctors were to his care. He developed close relationships with them. (Assistant Professor) Lisa Woodley continues the tradition today.”

In Foster’s presentations, students meet Dhillon and his family in words and pictures. They follow his surgeries, care and complications, cheer his reprieves and triumphs and marvel at his indomitable spirit: in every photo, he inspires with his exuberant smile and strong, winning presence.

“Dhillon approached life with a zest and joy that buoyed all of us,” said Foster. “His smile, his belly laugh, his enthusiasm for learning new things, for meeting new people, pushing himself to do it even when his body was resisting…He did not let the setbacks he experienced steal his joy.”

Dhillon loved to perform magic tricks, create complicated Lego structures, race remote controlled vehicles and visit the beach on annual trips with his family—collecting sea shells, doing crafts, riding the waves and blowing bubbles off the deck. While living with his illness, he and his family traveled to 10 countries.

Support from an informed community outside the hospital was important to Dhillon’s care. He enlisted his grandmother to help explain his “special heart” to friends, classmates and new teachers at his Montessori school. The two of them sat at the kitchen table and developed a PowerPoint, then collected a pulse oximeter and a model heart for props.

“We talked about what he wanted me to say about his limitations and what kind of understanding he wanted from his classmates and teachers,” Foster said. “We told them there are visible disabilities you can see when someone walks with a white cane or sits in a wheelchair, but many invisible disabilities can also leave you with special needs.

Dhillon said it would be helpful to him if his classmates walked more slowly when they changed classes so he could keep up with them… and to know why he couldn’t play soccer on a hot field or throw a football for long periods of time. He would be the scorekeeper.”

The goal of the Dhillon Jordan Shah Innovation Fund for Congenital Heart Disease is to stimulate the career path development and lifelong interest of health professionals in congenital heart disease: prevention, patterns of occurrence, assessment, treatment, family and sibling resources and needs across the continuum of care, and the growth and development of the child into adulthood.

The need is great. Each year, as many as 40,000 children are born with a heart defect—eight out of every 1,000 infants. More than 1.3 million Americans live with some form of a congenital heart defect, and chronic illness and disability push the numbers even higher: as many as 10-20 million.

To help meet the need, “Dhillon’s Gift” gives preference to projects that represent inter-professional efforts. “On one day between morning and noon, I counted 17 different health professionals who contributed to Dhillon’s care,” Foster said. “There is a huge context involved in illness, recovery and death—a whole cadre of people—not just the person in the bed.”

Those who would like to be part of Dhillon’s legacy are invited to contribute to the Dhillon Jordan Shah Innovation Fund for Congenital Heart Disease. More information is available on the Facebook page, “Dhillon’s Heart Journey.” Online gifts can be made at giving.unc.edu or by check c/o Anne Webb, School of Nursing, Carrington Hall, CB# 7460, Chapel Hill, NC 27599. For more information, contact Anne Webb, Assistant Dean of Advancement at 919-966-4619 or aaldridge@email.unc.edu.