12-year-old longtime advocate is Heart Hero of Capital Region Heart Walk

12-year-old longtime advocate is Heart Hero of Capital Region Heart Walk

Colton Berlin, 12 and born with Hypoplastic Left Heart Syndrome, is the Heart Hero of the 2024 Capital Region Heart Walk and Run.

12-year-old longtime advocate is Heart Hero of Capital Region Heart Walk

Colton Berlin, fifth from left, first worked with the American Heart Association to help pass the Pulse Ox Law in New York State. Now 12, he is the Heart Hero of the 2024 Capital Region Heart Walk and Run.

His volunteer work with the American Heart Association,  a global force for healthier lives for all, started in 2013, when he was just 2 years old, and he and his family joined a group of advocates at the New York State Capitol urging legislators to pass the Pulse Ox Law. Those efforts were successful, and since then, every newborn has their oxygen level tested before they are discharged from the hospital. A low oxygen level could show a critical congenital heart defect.

That was just the beginning of Colton Berlin’s involvement with the American Heart Association. The 12-year-old Mayfield boy and his family are regular participants in the Capital Region Heart Walk, and have been to the Capital Region Heart Ball. Colton is an active member of the Cardiac Kids group in the Capital Region, and has spoken to school assemblies as part of the Kids Heart Challenge, as well as regional boards of directors of the Heart Association. He has thrown out the first pitch at a Valley Cats game, and he’s used to talking with reporters.

This year, he is the Heart Hero of the 2024 Capital Region Heart Walk and Run set for June 2 at the W. Averell Harriman State Office Building Campus in Albany.

“I like to be involved with the Heart Association because it’s fun to be able to spend time with other kids like me,” Colton said. “I think the events the Cardiac Kids put on are great. I also think it is important to help raise awareness nd research for heart defects.”

Colton’s mom, Melissa Berlin, had a normal pregnancy and Colton seemed healthy when he was born.

“At his well-baby checkup one week after he was born, we found out he was in heart failure, when he started to turn blue in the pediatrician’s office,”  Melissa Berlin said.  Colton was transported to Albany Medical Center, an hour away, and became very sick.

“We learned that he had been born with hypoplastic left heart syndrome, which means that the left side of his heart hadn’t formed correctly. He was missing his left ventricle, the main chamber of his heart,” Melissa Berlin said. “He was in the NICU where he had a stroke, multisystem organ failure, and other complications. When he was 12 days old, he was stable enough to have his first open-heart surgery.”

Colton was in the Pediatric Intensive Care Unit for a month before he could go home. He had a cardiac catheterization and a second open-heart surgery between seven and eight months old. He had a third open-heart surgery when he was two-and-a-half years old.

“Looking back now at our journey with Colton,  I often think about what a scary time it was for us, when our son was going through his procedures in the early part of his life,” Melissa Berlin said. “It is easy to feel alone, not to know what to expect and to be terrified for your child’s future. Having the Heart Association and other parents available to us through groups and events they provide, has really helped us in this regard. Also, it is relieving to know that with research and medical advancements happening every day, our child’s future looks much brighter and different than it may have not long ago.

“Today, Colton is a golfer, a wakeboarder, plays soccer and basketball, loves his dogs, and is a good student,” Melissa Berlin said. “Had we not gone to the doctor that day, there’s a definite possibility that Colton wouldn’t be with us today. We are forever grateful to the American Heart Association, which has allowed us to do outreach in our community with other families like ours, and to make connections with people who are in similar situations. Colton is our heart hero every day, and we are happy to share his story as part of the  Capital Region Heart Walk.”

To join Colton at the Capital Region Heart Walk and Run, visit Capital Region Heart Walk.org.