Sammy Berko.Photo:Ilana Panich-Linsman
Ilana Panich-Linsman
For Sammy’s parents Jennifer and Craig it felt like their nightmare was happening all over again. In 2019, they had lost their 10-year-old son, Frankie, when he died suddenly after a seizure. But then, another shock: Sammy moved. And then his pulse started again. After 24 hours in the ICU, Sammy, now 17, woke up.
In the search for an answer as to why the seemingly healthy teen collapsed, doctors ended up solving the mystery of Frankie’s death - and discovered a dangerous family heart condition that also threatened Jennifer’s health.
After Sammy’s cardiac arrest, doctors ordered genetic testing for the whole family. (Frankie had genetic material remaining from a DNA trial he was supposed to take part in.) Sammy, Jennifer and Frankie all came back positive for a rare genetic heart rhythm condition known ascatecholaminergic polymorphic ventricular tachycardia (CPVT), which can cause fainting, seizures and sudden cardiac arrest in otherwise healthy people.
“It’s a shocking diagnosis,” Jennifer, 47, tells PEOPLE in this week’s issue. “But finally, for the first time in three and a half years, what happened to Frankie make some sense to us because we could never understand why he had a seizure and his heart stopped. Usually you have a seizure and then you come out of it. That was the part that nobody, not one emergency worker, not one doctor, nobody could understand."
Sammy Berko.Jennifer Berko
Jennifer Berko
Ackerman, who didn’t treat Sammy, notes that CPVT is “not a common syndrome, but it’s a missed one,” says Dr. Ackerman, who didn’t treat Sammy, “We in the field have a lot of work to do to increase the awareness.”
Encouraging stress testing for any unexplained exercise-induced fainting episodes or exercise-induced unexplained seizures “would have a profoundly powerful effect on decreasing tragedies,” says Ackerman. “That’s how you save lives.”
Once diagnosed, CPVT can be treated “very effectively," he says. “That’s the beauty of this disease is it’s incredibly treatable,” Ackerman says. Beta blocker medication can block the flow of adrenaline and doctors can perform a “minimally invasive” surgery through the left armpit called a left cardiac sympathetic denervation, which neutralizes the nerves releasing adrenaline.
Sammy and his mother are both on beta blocker medication, and Sammy underwent a sympathectomy,
After diagnosis and treatment, patients with CPVT are able to return to the activities they enjoy. For Sammy, who was left with paralysis on his lower body and for now uses a wheelchair, that includes playing basketball and drumming for his high school band.
Craig, Sammy, Frankie and Jennifer Berko in 2019.Jennifer Berko
“I want to get as close to how I was before, if I can,” Sammy tells PEOPLE. “No matter what happens, you can still find a way to get through it.”
Sammy Berko working with physical therapists.Ilana Panich-Linsman
Dr. Christina Miyake, who treated Sammy, says that when it comes to his recovery, “if anyone can do it, he can,” noting how vital treatment was after his diagnosis.
Sammy Berko photographed for People in September 2023.Ilana Panich-Linsman
Miyake continues, “People worry sometimes that with all of that activity, could that trigger the arrhythmias and I feel like we’ve been able to address that and help him with that and let him be back to as much of a normal kid as he can.”
For more on Sammy Berko’s story, pick up the latest issue of PEOPLE, on newsstands Friday, or subscribehere
source: people.com
