Pulmonary atresia with intact ventricular septum, tetralogy of Fallot, ventricular septal defect, supraventricular tachycardia, persistent pulmonary hypertension, chronic lung disease

What should have been one of the happiest moments of our lives turned into one of the scariest. Halfway through my pregnancy, doctors told us that something was wrong with our baby’s heart. As first-time parents, we were terrified and overwhelmed, trying to absorb every bit of information and find the best care for our little boy.

Edward James “Eddie” Mayerik entered the world on April 6, 2015, just before midnight. I held him for only 30 seconds before he was whisked away to the NICU. The next morning, at just 18 hours old, he had his first cardiac catheterization, which revealed multiple diagnoses — including pulmonary atresia, ventricular septal defect, and major aortopulmonary collateral arteries (MAPCAs).

At first, we were grateful that surgery could wait until he was stronger, and we took him home for what would be the most normal part of his life. But at 8 weeks old, Eddie’s oxygen levels dropped, and he was admitted to the Pediatric Cardiac ICU. His first open-heart surgery lasted eight hours, beginning a journey that would include seven open-heart surgeries, multiple cardiac catheterizations, and countless complications.

Eddie’s courage and resilience were extraordinary. He fought through infections, bleeding, collapsed lungs, and long hospital stays. Even when hooked to machines, his spirit shined. We called him “the CHAMP” because he always came back fighting — even coming off ECMO faster than his nurses had ever seen.

As Eddie grew, he faced new challenges — from feeding difficulties to developmental delays — but he never let them stop him. He loved school, his family, and being a big brother. He was curious, funny, and brave beyond words.

When the pandemic hit, our fears multiplied, but we were able to keep him safe. In 2021, after his care team determined his complex condition required specialists in California, we traveled to Lucile Packard Children’s Hospital at Stanford, where he underwent a 27-hour open-heart surgery — his last and most extensive. Though recovery was grueling, Eddie amazed everyone again by coming home.

By 2023, his lungs had grown weaker, and infections came more often. Despite everything, he kept smiling and fighting. On April 6, 2023 — his 8th birthday — Eddie came off ECMO for the final time, surrounded by love. Just three months later, on July 6, our brave boy’s heart finally rested.

We are devastated but forever grateful. Eddie brought light and hope to everyone who met him, and his legacy lives on through the foundation we started in his honor — to continue sharing his light with the world.

We miss you, Eddie. You will never be forgotten.