The Numbers

Eleven-year-old Camper Eddie and his family appreciate math. Numbers like 11, 1, 8 and 2,920 mean more since 2012.  January 2012, eight years ago, is when Eddie’s life changed in a heartbeat.

Party of 5

Camper Eddie is the youngest of five children. Parents Sarah and John know that there is always an abundance of affection with plenty of hugs to go around. There is always someone there to play peekaboo, read a book to, splash you, or sing a tune. Eddie was one incredibly lucky baby! In the midst of the chaos of this high-energy household, Sarah remembers noticing there was something about Eddie’s color and demeanor that was different from her other babies. He cried all the time, and he didn’t eat much, but there was no real answer for what was going on with her little boy.

In a Heartbeat

Three-year-old Eddie was a growing toddler just on the brink of preschool, but he was sick a lot and just didn’t seem healthy. Unlike most kids his age, Eddie would stick close to mom—never choosing to run around or roll in the mud with kids his age. He simply did not have that “kid energy.”

January 2012 was when it all started making sense. His parents can never forget the moment one normal Sunday evening at home when their oldest son called out, “There’s something wrong with Eddie!” He had collapsed on the kitchen floor. “There was no pulse. Eddie wasn’t breathing. We couldn’t detect a heartbeat,” his mother, Sarah, said. John began CPR and when the ambulance arrived 3 minutes later, Eddie had started breathing again. “There was the relief that he seemed ok, but so many questions. What was going on with Eddie?”

The Diagnosis

Eventually doctors diagnosed Eddie with restrictive cardiomyopathy caused by a rare genetic mutation that would eventually lead to heart failure. “They told us he just needed a new heart.” Now everything about Eddie made sense, but the path was one that no one expected or could ever be prepared for…

Eddie was placed on the heart transplant list at the end February 2012. The family waited at home, hoping each new day the call would come with news that a new heart was available. One morning in early March, Eddie really wasn’t doing well. Sarah said, “I just knew we needed to leave right then to get him to Seattle Children’s where people could care for him.” They rushed to the hospital in an ambulance. It turned out Eddie’s heart had failed, and within 10 minutes doctors put him on life support.

“The next 2 months Eddie was in the ICU on a variety of life support mechanisms, artificial hearts,” John said. “He had a pulmonary embolism. He had a stroke. All kind of really horrible things happened to him in the hospital.”

Eddie was not ever going to come home from the hospital unless he got a new heart.

A Heartfelt Thank You

99 days after the initial diagnosis, Eddie’s life forever changed. He got a new chance at life. A donor heart became available and on May 2, 2012 Eddie was prepped for a heart transplant.

Gratitude for their gift and sorrow for the unimaginable loss of their donor family will always be in the hearts of Eddie and his family. “They gave of themselves during the worst time of their lives to give Eddie a chance at life. It has made all the difference in the world to our family. Every time we look at Eddie, we think about the people who kept him alive in the hospital, the family and friends who supported us, and the donor and her family who are very special to us,” reflect Sarah and John.

Friendship, Happiness & Life

As of his 8th heart birthday on May 2, 2020 Eddie’s “new” heart has officially been beating for 2,920 days since transplant. Now 11 years old, Eddie is completing his elementary school years with his parents, siblings, teachers, classmates and friends cheering him on.

His family hold two celebrations for Eddie each year: One for the day he was born, and the other to celebrate his “heart birthday.” Sarah said, “Without that heart transplant, without the immeasurable gift given by his donor family, Eddie wouldn’t have celebrated any more birthdays.”

Every year his classmates gather to congratulate him and celebrate the gift his donor gave. This year may look different with masks, gloves, and social distancing, but in true camp spirit his classmates and neighbors rallied together and cheered in a car parade to celebrate his 8th heart transplant birthday! Camper Eddie along with his community raise a heart shaped cupcake in remembrance of what he has overcome and to the bright future he is painting!

“Last summer [at camp], there were these rocks we made—I decorated mine and wrote the name of my heart donor on the back. If you look under a certain big tree, you’ll find a rock with ‘Marissa’ written on it.” – Camper Eddie

 

Camp Korey celebrates Eddie’s perseverance, determination, and spirit. Thank you to Eddie’s family for supporting Camp Korey and the gift of independence at camp that we give to children who have braved solid organ transplants. We also want to take this time to acknowledge with great appreciation our medical & programs teams who make it possible for families like Eddie’s to experience the simple joy of childhood at camp or while in a hospital setting.