Live Like Frankie: The Berko Family's Journey from Loss to Legacy
The phrase “Live Like Frankie” began as a tribute to a young boy’s boundless love, joy, and connection. For the Berko family, it has become a daily mantra—a rallying cry to live with purpose, to care deeply, and to connect unconditionally. Frankie’s parents, Jen and Craig, say that to “Live Like Frankie” is to soak up every moment and share love freely.
“To us, it means to give and receive love very fluidly with all people and to really engage and connect all the time,” she says. “And he did that really beautifully and very naturally.”
Frankie was the youngest of the Berko brothers, a child full of bright energy and empathy. He was known in his neighborhood for knocking on doors, not just to ask friends to play, but to genuinely check in on neighbors—adults and children alike. He radiated connection in the purest way. His sudden passing at the age of 10 devastated his family and left them with more questions than answers. There was no known family history of seizures, epilepsy, or other possible related health issues. No definitive cause of death was identified at the time of Frankie’s passing despite exhaustive testing. The Berkos were left with an unbearable mystery. But even in their grief, they carried his joy forward.
Four years later, that mystery would begin to unravel.
Frankie and his older brother Sammy had always shared a similar spark—playing soccer, shooting hoops, living life to the fullest with curiosity and laughter. But one day, while rock climbing with friends, Sammy collapsed in his harness: a sudden cardiac arrest. Rushed to the hospital in critical condition, doctors feared the worst.
Sammy continued to decline despite his medical team’s best efforts. The family braced for tragedy, again. Doctors gently told the family that he would not make it. As the time of death was declared, the family stared at Sammy in disbelief. But then, a miracle occurred: as the family sat by Sammy’s side, his carotid artery pulsed—a heartbeat. Defying the odds, he came back to life.
“I couldn’t believe it,” recalls Craig. “He was laying on the table and I’m just staring at him in disbelief. And all of a sudden I can see it pump! And I screamed. ‘He’s got a heartbeat, he’s got a heartbeat.’”
In the wake of Sammy’s sudden cardiac event, doctors began investigating the link between the 2 brothers’ symptoms. They turned to genetic testing for answers. The results were as illuminating as they were devastating: Sammy had CPVT—catecholaminergic polymorphic ventricular tachycardia. And so did Frankie.
Jen and Craig had spent years searching for an answer to what happened to Frankie. It had been labeled “Sudden Unexpected Death in Epilepsy” but never felt like the full truth. Now, with this diagnosis, the pieces finally fit. The seizures. The cardiac irregularities. The moments that felt wrong but were unexplainable. It was CPVT all along.
The Berkos also learned that Jen herself carries the genetic condition, and that what happened to her sons could be traced back to a gene no one had thought to test for. That knowledge didn’t erase the pain, but it transformed it—into purpose.
Armed with these answers, Sammy is now 18 and living with CPVT without letting it define him.
Sammy uses a wheelchair due to paralysis from his cardiac arrest, and he finds ways to adapt how he continues to do what he loves. This includes his passion for drumming—which he pursues with a modified drum kit that works without the foot pedals found in other kits. With every beat, he expresses his resilience, his creativity, and his determination to live fully, no matter the limitations.
His family, meanwhile, has committed themselves to raising awareness, advocating for genetic testing, and helping other families recognize the signs that once went unnoticed. Their resilience has turned heartbreak into hope—which they share with others still searching for answers.
Each challenge has trained Craig to live with the weight of constant vigilance. Every call unanswered, every moment of silence, triggers anxiety. Yet, through that fear, he remains grounded in pride—pride in how his family has chosen to live, to help, to speak, and to shine a light for others.
Misdiagnosis remains one of the greatest challenges of CPVT. Often hidden behind symptoms that mimic other conditions, it takes persistence, motivation, and awareness to uncover. For the Berko family, discovering the cause of one son’s condition helped solve the mystery of another—and revealed important information for the entire family. Their story now serves as a lifeline for others.
Through their advocacy and openness, the Berkos have found ways to turn grief into something meaningful. Jen now works with the Sudden Arrhythmia Death Syndromes (SADS) Foundation, channeling her experience into helping other families find answers sooner. It’s work that gives their loss a deeper purpose—ensuring that what happened to them might be prevented for someone else.
Sammy is charting an extraordinary path of his own. This fall, he’s starting at Vanderbilt University on a scholarship, pursuing a double major in physics and neuroscience. It’s an incredible achievement for any student—but for Sammy, it’s so much more. He’s overcome paralysis, the daily challenges of managing CPVT, and the emotional weight of surviving something most don’t. He could have stopped. Instead, he chose to keep going—driven, determined, and full of hope for what’s next.
In their own ways, the family is always pushing for more research, better awareness and earlier testing. But most importantly, they are keeping Frankie’s spirit alive—not just in memory, but in mission.
To live like Frankie is to find light in the darkest places. To transform pain into connection. To offer joy where there’s been loss. And to hold onto hope—even when the answers come late.
They live every day with purpose. With connection. With courage.
They live like Frankie.
