A Heartbreaking Loss, A Life-Saving Discovery: The Legacy of My Son

Losing a child is a pain that no parent should ever have to endure. But when that loss comes unexpectedly—out of nowhere, with no warning signs—it’s even more jarring.

I will never forget July 24, 2022. It was a beautiful, warm, sunny Sunday. My son Derek had left to return to college earlier that day and I was sitting on my deck, enjoying a quiet night waiting for him to call after basketball practice. When the phone rang at 9:06 p.m. I answered with excitement to talk to him only to hear his coach on the other end. In an instant, everything in my life changed. The peace of that evening was replaced by a wave of panic and a couple hours later, a heartbreak that would alter the course of my life forever. That phone call shattered my world, and my world was divided into a before and an after.

My son Derek was just 20 years old. He was an amazing person—an incredible son, brother, twin, uncle, grandson, and friend. An elite college athlete who had played basketball since the age of five and was always in excellent health, or so we were told. His energy and determination were inspiring, and his warmth and kindness touched everyone who knew him.

He has an identical twin brother, and they were inseparable, sharing a bond that was deeper than words could capture. His passing has left a void in our hearts and our lives that will never be filled. There are no words for the ache of waking up every day knowing that one of the people you love most in this world is no longer here. As a mother, I still wrestle with the unbearable question: Why him? Why didn’t we know?

The Shock of an Unexpected Heart Attack

When my son passed away from a sudden heart attack, it was nothing short of a nightmare. He was young, healthy, full of life, with no signs of illness. His death was not just unexpected—it was completely unfathomable. I have asked myself how a million times. How could my healthy, vibrant TWENTY-year-old son die so suddenly?

The doctors at the trauma center he was taken to did not have any answers on that night of July 24, 2022. Just the words that still echo in my mind to this day; “we are sorry, your son has passed away…” and they didn’t know why.

The weeks following his passing were gut wrenching as I waited for the medical examiner to complete the autopsy. The autopsy revealed that my son died of a heart attack, and he had a 90 percent blockage of his left anterior descending (LAD) artery; often referred to as the widow maker – but they still had no clear answers. The medical examiner indicated that in all her career, she had never seen so much disease in a young person’s heart. She also knew my son had a twin brother, so she suggested genetic testing.

The Cascade of Discovery: How It Saved Us

As part of the grieving process, coupled with the medical examiner’s advice and search for answers, Derek’s identical twin brother underwent genetic testing and the rest of us followed with cascade genetic testing—a method of testing family members of someone diagnosed with a genetic condition.

Cascade genetic testing is how we discovered the underlying cause of my son’s sudden death: Familial Hypercholesterolemia (FH). FH is a genetic condition that causes dangerously high cholesterol levels from birth and significantly increases the risk of early heart disease. Despite regular check-ups and no outward symptoms, we had no idea Derek was living with this silent condition that if left undiagnosed and untreated can become a silent killer. Advanced heart disease is a result of this undiagnosed genetic condition that took my son from me in an instant without any of us knowing his heart was suffering or the risks and that it could have been prevented. My son didn’t have a chance to know, and neither did we.

And he wasn’t alone. After his passing, and the genetic testing, we discovered that his twin brother, his grandmother and I also have FH. I was suddenly not just a mother grieving the loss of her son but a parent of a son with a diagnosed condition and a patient of this condition. I was so lost and scared and sad and confused and desperate for answers. Through my desperation for understanding this diagnosis, I found the Family Heart Foundation.

In some strange, cruel twist of fate, my son’s passing may have saved the lives of those he loved the most. His diagnosis, though posthumous, led us to an early understanding of our own genetic risks. I don’t know if I would have ever known I had FH without the tragedy we endured. His twin brother, who now knows his condition, can take steps to prevent the same fate. My son Derek didn’t have a chance to know but my family and I are fortunate to have this knowledge, and I honestly believe my son, in a way, added years to my life and saved his twin brother’s life.

A Legacy of Awareness and Prevention

While this journey has been devastating and overwhelming, it has also given us a sense of purpose in my son’s legacy. What could have been a story of silent suffering for all of us has instead become a rallying cry for awareness. Thanks to genetic testing, and the Family Heart Foundation, we’ve been able to learn so much about this condition and we now know how to take action to mitigate its dangers. The education and support by the Family Heart Foundation has led us to change our lifestyle, pursue treatment, and stay vigilant about our cholesterol levels. The Family Heart Foundation has helped me breathe again after losing my son. Their unwavering support, passion and love has helped me with my grief and my health.

I often wonder, in a world where things are so fast paced and medical conditions can remain undiagnosed for years, how many other families are out there living in the same blind spot we once were? How many other children, parents, and siblings are walking around with a silent threat, unaware of the risks they face? The truth is this could happen to anyone. This is why I share my son’s story—not just to honor him, but to raise awareness so others have a chance to avoid this level of heartache.

How This Disease Can Affect Families: A Call for Action

Familial hypercholesterolemia is a condition that needs more attention, more research, and more public awareness. Too many people, like my son, have their lives cut short before they even had a chance to understand what was happening to them. The key to survival is early detection and diagnosis. This is one of the many reasons I became an Ambassador with the Family Heart Foundation. This Family Heart Foundation has provided me with answers many physicians never could prior, coupled with given me a platform to speak to others raising awareness by sharing our family story.

I urge anyone reading this who has a family history of heart disease or high cholesterol to speak with your doctor about the possibility of genetic testing. Cascade testing can help identify not only those who are affected but also family members who may be at risk.

We live in an age where we can easily detect these genetic issues before they become life-threatening. Don’t wait for tragedy to strike. I don’t want anyone to go through what my family has experienced. We were fortunate to be given a second chance, but so many others are not. Let my son’s story be a reminder: knowledge can save lives.

A Final Tribute to My Son

I miss my son every single day. He was more than just my child—I feel as though he was an angel who was meant to do something greater than we could ever understand. Through his passing, he gave us the knowledge that saved my life and his twin. He likely added years to his grandmother’s life as well and his story will potentially help thousands of others identify their potential risk and seek treatment therefore saving more lives. While the grief will never leave me, the hope that we can save others with our story is something that keeps me going.

Thank you to the Family Heart Foundation for their tireless work and advocacy in raising awareness about FH and to my son, for the gift of life that you gave to the rest of us. Derek Gray, your legacy is one of awareness, love, and prevention. We will continue to fight to ensure that your passing was not in vain. I miss you and I love you with every part of me.