Supporting Grieving Families Through Rare Disease Loss: The Traces of Trinity Foundation’s Mission of Hope
By Crystal Jennings
In 2004, my husband Darrell and I began our life together as husband and wife, excited for the journey ahead. Early on, we knew we wanted children—children who would be close in age and close as siblings and friends. And so, in January 2007, our first daughter, Aaliyah, was born, and just under two years later, in December 2008, we welcomed our second daughter, Lailah. Both girls were healthy, beautiful, and formed an inseparable bond. For years, we enjoyed life as a family of four, watching our daughters grow, laugh, and become best friends.
The Light of Trinity: A Joyful Arrival
But about ten years later, something shifted. Almost out of nowhere, I began to feel a deep yearning to add another child to our family. At first, my husband Darrell had questions—after all, we had two daughters who were growing older, and the idea of starting over with a new baby was daunting. Yet, after thoughtful discussions and shared excitement, we decided to try for another child, and before long, we were expecting again. This time, our joy came in the form of Trinity Anne Marie, born on July 21, 2019.
From the very beginning, Trinity was a source of immense joy and light in our lives. She was healthy, happy, and oh so beautiful. Her bond with her older sisters, Aaliyah and Lailah, was nothing short of magical. Despite the age difference, the three of them were inseparable, and it was clear that Trinity adored her big sisters as much as they adored her. Trinity quickly became the spark that brought even more laughter, love, and connection into our family.
A Spark Like No Other: Trinity’s Spirit
As a child, Trinity was spunky, funny, and wise beyond her years. She was a little firecracker, full of 
big feelings and even bigger smiles. She had a way of filling a room with her energy, and you couldn’t help but feel brighter just being around her. She loved to dance, laugh, and play, and she had this beautiful ability to make every moment feel special. Her curiosity was endless—Trinity wanted to know how things worked, what people were feeling, and most of all, how to bring joy to everyone around her. In her short time with us, she taught us so much about living fully and loving deeply.
Our life with Trinity was rich with precious memories and moments of pure happiness. We will always cherish those early days—her first steps, her giggles, her spontaneous hugs. But the richness of Trinity’s life was not measured in the length of her years, but in the depth of her spirit and the love she shared with all of us.
A Sudden Shift: The Day Everything Changed
On November 5, 2023, our world turned upside down. What began as an ordinary day became the start of a journey we could never have imagined. Trinity suffered a mini-stroke, and in an instant, our lives were changed forever. The doctors began a 12-day process of running countless tests, trying to understand the cause of what had happened to our little girl. Trinity, being the fighter that she was, started to improve during those 12 days, a sign that we clung to as we prayed for answers.
A Rare Diagnosis: Facing Balamuthia
Despite her brief recovery, the tests came back negative one after another, leaving us with more questions than answers. It wasn’t until one of the final tests was done that we received the diagnosis: Balamuthia mandrillaris, a rare and often fatal brain-eating amoeba. In that moment, our hearts sank.
Balamuthia is an extremely rare disease, with just over 200 documented cases worldwide since its discovery in 1986. The amoeba has a devastating 95 percent mortality rate, and tragically, most cases are only discovered during autopsy because it is so rare and often undetected until it is too late. Patients usually succumb to the disease within days or, at best, two weeks after symptoms appear.
A Warrior’s Grace: Trinity’s Hospital Journey
But Trinity was not like most. She fought this battle with a strength that left us in awe. Trinity fought for nearly two months, far exceeding the grim prognosis of days or weeks. She battled this illness with a grace and courage that inspired everyone around her. At one point, Trinity had improved so much that we were able to bring her home after 40 days in the hospital. 
We had the gift of spending quality time with her at home, where she could be surrounded by the love and warmth of her family, especially her sisters. But just four days after returning home, Trinity’s condition took a sudden turn. We rushed her to the ER, where we learned that the pressure on her brain had increased. Despite every effort to save her, our precious Trinity passed away on December 31, 2023.
Losing Trinity was, and still is, the hardest thing we have ever faced. We will likely never understand why our family and our little girl were chosen for this journey, but we take comfort in knowing that God was with us every step of the way. Trinity’s fight against Balamuthia was nothing short of miraculous. Nurses and doctors continually remarked that she was the ideal patient—a shining light even in the face of such a rare and aggressive illness. Her love touched the hearts of so many people in the hospital, and even while she fought this devastating disease, she gave love and hope to everyone who cared for her.
Continuing Trinity’s Light: A Mission of Hope
Although we are devastated by her loss, we are also profoundly grateful. We were blessed with four years of pure joy, love, and laughter with Trinity. 
In those four years, she made a mark on the world that will never be forgotten. Trinity was, and will always be, our unicorn—a beautiful, rare, and magical being who brought light wherever she went. Her impact continues to be felt, not only in the hearts of her family but also in the lives of those she touched during her time on Earth.
In the wake of her passing, Darrell and I felt called to continue Trinity’s legacy of love, strength, and hope. On July 19, 2024, we launched The Traces of Trinity Foundation in her honor. The foundation is our way of keeping Trinity’s memory alive while helping other families who face similar challenges. Our mission is simple but powerful: we are dedicated to providing support and resources to families with children facing extended hospital stays, especially those fighting rare diseases like Balamuthia. Through our foundation, we aim to spread hope, raise awareness, and bring comfort to families who are walking their own difficult journeys.
Trinity’s life may have been short, but it was filled with love, beauty, and purpose. She taught us how to fight, how to love fiercely, and how to make every moment count. The foundation we built in her honor is a testament to her strength and the lasting impact she has had on our lives. Every family we help, every bit of awareness we raise, and every act of kindness we share is a reflection of the love that Trinity gave to so many around her.
Our vision is to ensure that no family feels alone or overwhelmed during their journey. We want them to know that, just as Trinity touched our lives with hope and joy, they too can find comfort and strength. Trinity’s legacy lives on through The Traces of Trinity Foundation, and we are committed to honoring her memory by supporting families and spreading her light.
We love you, Trinity, and we thank you for making our lives so much better. Your life was short but unimaginably rich and your love will forever live on in the hearts of all who know you. —Mom
Crystal Jennings lives in West Sacramento, CA and works in the political reform division within the Secretary of State as a Staff Service Manager over Lobbying Registration and Reporting.