ARVC Awareness: Matthew’s Story

In October of 2022, Matthew was taking a dinner break during a World of Dance rehearsal in New York City when he experienced Sudden Cardiac Arrest (SCA). It was his first symptom of an underlying heart condition. A friend started CPR, and Matthew was shocked twice...

CPVT Awareness: The Berko Family Story

Every morning I am greeted with the same bittersweet reality. Bitter is just a taste of the eternal emotion of losing a child. Sweet is the ever-present gratefulness that one of our children came back to life after being pronounced dead.   We choose to share our...

Caryn’s Long QT Syndrome Story

I have a strong family history of relatives experiencing “heart attacks” (or perhaps cardiac arrests) and dying at a young age. When I was a kid, I thought everyone eventually died of these “heart attacks”.  In my family, the deaths were instant, and happened while...

LQTS Awareness: Diane and Jimmy’s Story

Jimmy’s dad and I adopted Jimmy when he was six weeks old. He was born with a cleft palette and other conditions that required repeated PE tubes and almost nonstop antibiotic use. His autism and Attention Deficit Disorder became apparent when he was very young. We...