Frankie Berko

31st No Ball Invitation

On a bright, sunny day Frankie is waddling down the street as toddlers do when suddenly, hysteria ensues. Frankie is crying and can’t calm down. My husband and I look all around him and see nothing. I get down on his level and take a closer look to discover Frankie is afraid of his own shadow! A child literally afraid of his own shadow? I’ve never seen anything like it before. He takes a step and it’s following him. He turns to go back, and it follows. His face cherry red and wet, I get eye to eye with him and show him I have a shadow too and so does Daddy. I show him how I like to play with my shadow and in 0.2 seconds his cries become squeaks of joy as he has found a new game; a new friend. That’s our youngest son, Frankie. No matter his age, even as a pre-teen, he’s always a sensitive soul. He’s the first to friend the friendless and the first to help others. Our neighbors still laugh about how he’d come by just to say hi and see how they were doing even when their kids weren’t around to play. He’s volunteered to help cancer patients, nursing home patients, and so many more. He is active, athletic, smart, well liked, and happy. Frankie is forever my velcro. He left his earthly body at ten years old on September 12, 2019, but I continue to speak of him in present tense. His soul is very much still with us; reminding us we are all connected by universal love. That is why today, I am a new member of the SADS staff as the Community Engagement Coordinator. I will not let Frankie’s death be the end of the story. It will mean something. Frankie will continue to help others and save lives with his story. 

SADS was recommended to us immediately after our older son, Sammy, 16 at the time, suffered a cardiac arrest in January 2023. He was pronounced dead after over two hours of CPR but came back to life five minutes later suffering a TBI and paraplegia that landed him in a wheelchair. His hospital team ran a rapid genome sequencing DNA panel that revealed my two sons and I have CPVT. After four years of questioning Frankie’s cause of death, we finally had an answer because of his brother. His death had previously been ruled a Sudden Unexpected Death in Epilepsy as he had a seizure on his last day and a few times prior. Not even a specialized neurologist knew about CPVT or the correlation between it and seizures.You know who did? SADS. From the hospital, we were able to learn about CPVT and find community through the SADS website. SADS became a beacon of light and that is why our whole hearts are committed to the No Ball At All Campaign. Money raised for this outstanding foundation will help to ensure that no other family suffers as we have.