John is a happy, compassionate, and bright 10-year-old boy who loves science and learning how things work – and who almost lost his life because of an undiagnosed heart condition called CPVT.
“John’s very first symptom of a heart issue, as it is for many families with CPVT, was a Sudden Cardiac Arrest,” says his dad, Josef. In October of 2021, John’s family was watching a movie together. When Josef looked down, John was laying in an unnatural position, and he knew something was wrong. John’s mother was previously CPR-certified and started performing chest compressions and 911 was called; the paramedics arrived within six minutes and applied an AED.
John crashed several times in the hospital, and was taken via helicopter to a larger medical center, where he crashed an additional three times. “They kept bringing him back,” says Josef. “The next morning, they sent him to Boston Children’s hospital in an ambulance that looked like a tank – intubated and with hooked up to tons of monitors – to run more tests.”
Boston Children’s Hospital, and particularly Drs. Dominic Abrams and Elizabeth DeWitt, have been a lifeline for John’s family. “They changed the whole game,” says Josef. “We had a team that included genetic counselors and electrophysiologists. After retelling our story in a conference with Dr. Abrams and Dr. Dewitt they thought of CPVT when we told him what had happened. Almost three years later from diagnosis we’ve worked with Dr. DeWitt, and she really empowers and engages with John about his heart condition.”
His team put John on Nadolol and Flecainide, and he has a loop recorder so that his family can send transmissions of his heart rhythm to his team when he’s not feeling well. Ever since meeting his team at Boston Children’s, John has been stable.
“John is compassionate, brave, and strong – he’s a bright spot in everyone’s day,” says Josef. “He doesn’t let this condition get him down. He’s actually pretty proud that he
understands it, and his limitations.”
John’s family has an AED and adjusted to their “new normal.” John currently is interested in science, band, engineering, Lord of the Rings, Harry Potter, and wrestling.
“When you discover what your new normal is, you redefine your whole life,” says Josef. “There is nothing wrong it, or changes in what you do. After this diagnosis, your child is still your child; your love for them is the same, if not even further because you now have perspective. As a parent, you have gears you didn’t know you had in situations like this. We have been so fortunate, and cherish the support of our family, school, local community, SADS, and Boston Children’s Hospital.”