From the sidelines of countless sports events, I was the loudest cheerleader for my children. Little did I know the loudest mom would one day temporarily lose her voice to an unimaginable tragedy.
From an early age, both of my children were heavily involved in sports. They were multiple sport athletes, and I took great pride in coaching and being the loudest mom in the stands. Sports had always been such a huge part of our lives that it seems bittersweet that the worst day of my life happened while I was watching my youngest, Jacory, at a sporting event. I received a call that fateful day telling me my oldest son, Vari, had died. Jacory was running his leg of a 4x4 relay when Vari suffered a sudden cardiac arrest during a pickup game with friends.
That day – March 30, 2017 – was the day that the loudest mom lost her voice. A doctor told me that he suspected Vari had an undiagnosed heart condition. We were a sports family, and I had coached and played myself, so I was surprised that I had never heard of sudden cardiac arrests prior to receiving the autopsy report that stated sudden cardiac death. What we learned is that Vari had hypertrophic cardiomyopathy (HCM), a genetic condition that causes the heart muscle to thicken. While laughing and talking to his friends, Vari’s heart stopped, he fell, and we have never been the same again.
Though I would love to say that I immediately began using my voice, being loud, and advocating for change, the truth is I was quiet. I was angry, sad, lost, and I kept wondering how this could have happened. The medical examiner told me that HCM was so hard to detect that nothing could have prevented it and that it was so rare, it was like lightning striking. For two years, I felt like the only mother in the world who experienced such a tragedy. And then lightning struck again. In 2019, Vari’s godmother and my lifelong best friend drove to work and never got out of her car. We were 40 years old, and she was the pinnacle of health. But when the autopsy report came back, that familiar phrase stuck out to me: “sudden cardiac arrest.” Lightning doesn’t strike twice in the same place and yet, somehow, it did. I realized I could remain sad and quiet, or I could get busy and do something about it.
I began writing about my experience with grief and I began researching cardiac arrest. This resonated with others, and one of my social media posts went viral. The Today Show reached out to me and covered Vari’s story. By sharing my story, I was connected to hundreds of other parents who lost their children to SCA. I had found my voice. I decided the best way to continue cheering for Vari was to share his story, his legacy, and his life.
Lekesha Benson, right, in Washington, DC for the Hearts on the Hill Fly-in
I became determined to be as loud as I had ever been in those stands, now advocating across our community, state, region, and the entire country for legislation, policy, and education to prevent sudden cardiac arrest and improve survival rates. My youngest son and I launched a nonprofit, the Nola Network, with the goal of saving and enriching lives by increasing equitable access to services, increasing awareness, and supporting advocacy. We work with other great organizations like the American Heart Association (AHA) because together our voices are amplified.
I was humbled and honored when the AHA gave me the honor of a lifetime, by allowing me to work with them and so many other powerful individuals and organizations to advocate with them during the Hearts on Hill event in Washington, D.C, to advocate for legislation aimed to save lives from cardiac arrest in schools. I knew that I could not bring my son back, but I would work for the rest of my life to prevent someone else from losing theirs. Creating this kind of change is not easy. Indeed, it’s a marathon that we’re running and together, with AHA and others, I am determined to finish the race. I know that my son, Vari Benson, and my best friend, Chanda Bradley, would expect nothing less and they’re at the finish line cheering me on.
Together, we can make a difference. Let’s raise our voices, spread awareness, and work tirelessly to prevent sudden cardiac arrests. I urge you to join me in this marathon for change by contacting your U.S. Senators and asking them to support legislation to save lives from cardiac arrests in schools. Your voice can help save lives and ensure that no other family has to endure the pain of losing a loved one to sudden cardiac arrest. So, let’s keep running and making our voices heard!