The moment I walked into my 20-week anatomy scan, I had no idea that my world was about to shift in a way I never could have imagined. As the technician moved the wand across my belly, the quiet tension in the room grew, and my heart began to race. When the doctor came in, he confirmed what I feared—our little boy, J.R., had been diagnosed with Truncus Arteriosus, a serious congenital heart defect.
In that moment, my mind went blank. The first question that escaped my lips was, “What does this mean for us?” My doctor’s answer was simple: “You’ll be delivering at Duke University.” It was clear that the road ahead would be filled with uncertainty, fear, and many unknowns, but I knew that we had a long journey ahead, one that would require all of our strength, courage, and faith.
The initial shock was overwhelming, but as the days passed, I began to research Truncus Arteriosus and what it would mean for J.R. and our family. I learned that the condition would likely require multiple open-heart surgeries throughout his life—five surgeries, to be exact, along with many other potential procedures. The thought of seeing my child go through so much pain and uncertainty was almost too much to bear, but I tried to hold onto hope. There had to be something out there that could help our little warrior.
That hope came from an unexpected source: the groundbreaking research funded by the Brett Boyer Foundation and the expertise of Dr. Joseph Turek and his team at Duke University. We were introduced to an innovative procedure that would change everything. J.R. was a candidate for a partial heart transplant, a relatively new and rare procedure that had the potential to save his life.
The idea of a partial heart transplant was a revelation. While J.R.’s heart wasn’t functioning properly, the valves were still in excellent shape. Thanks to the research funded by the Brett Boyer Foundation, the procedure allowed J.R. to receive a heart transplant of sorts—but with the added benefit of live tissue that would grow with his body, potentially reducing the need for further open-heart surgeries down the road. It felt like a miracle in the making.
This procedure, the Partial Heart Transplant, was the result of years of research, development, and dedication by the medical community, and we were so grateful that our son was able to be part of this groundbreaking approach to heart care. But the miracle didn’t stop there. J.R. wasn’t the only one who received a gift of life through this process. The little girl, Grace, whose heart was used in the partial transplant, became an angel in J.R.’s story. Grace’s family, in their most heart-wrenching moment of loss, gave J.R. the gift of life through their selflessness and bravery.
Grace had received a life-saving heart transplant, but a part of her original heart—the valves—was able to be donated to J.R., a beautiful act that connected two families in the most extraordinary way. What felt like heartbreak for Grace’s family was transformed into a story of hope and healing, and it brought us together in a way that words can’t describe. Through a small-world connection, we eventually met Grace’s family and learned that an earlier offer had fallen through, allowing the perfect timing for the transplant. What was once a tragedy for one family became a miracle for another, and the profound bond between our families is something we will cherish forever.
Grace’s parents gave us the greatest gift imaginable—the chance for our son to live a life that seemed uncertain just weeks before. And in turn, we are forever grateful to them for their unimaginable generosity and the selflessness they showed in the midst of their own grief. We will never forget their part in our miracle, and we will always carry Grace’s memory in our hearts.
J.R. is now at home, adjusting to his new life and new normal. We’re no longer in the ICU, and we’re slowly finding our rhythm as a family, but there’s a profound sense of gratitude that fills our hearts every day. We don’t take a single moment for granted. Each day we have with J.R. is a gift, and every laugh, every milestone, and every small victory is a reminder of how far we’ve come.
The road ahead is still uncertain. J.R. is listed low on the transplant list, and while we are hopeful for his continued progress, we know that his journey is not over. But we also know that we are not alone in this fight. We are surrounded by the love and support of family, friends, the incredible medical teams at Duke, and the generosity of strangers whose research and acts of kindness have made all of this possible.
We cannot thank the Brett Boyer Foundation enough for funding the research that has given J.R. a second chance at life. We also want to express our deepest gratitude to the donor family—especially Grace’s parents—who made the ultimate decision to give J.R. the chance to live. Your generosity, even in the darkest of times, has created a legacy that will continue to inspire and touch lives for years to come.
J.R.’s story is one of miracles, bravery, and incredible generosity. It’s a story of a little boy who has defied the odds at every turn and a family who will continue to fight for him every step of the way. We are beyond grateful for every person, every team, and every piece of research that made this possible.
As we continue this journey, we carry the memory of Grace with us and honor her by cherishing every moment we have with J.R. His fight is our fight, and with hope in our hearts, we’ll keep pushing forward, always believing in the miracles that can happen.
