2024 Capital Region Heart Walk and Run

Colton is an active and awesome 12-year-old boy who was born with Hypoplastic Left Heart Syndrome. When Colton was born, we had no idea he had a heart defect. He was born full term, after an uncomplicated pregnancy and appeared to be a healthy and thriving baby. We found out at his well-baby checkup a week later that he was in heart failure, when he started to turn blue in his pediatrician's office. We were rushed to Albany Med, an hour away from where we live, and found out he was missing his left ventricle and had a very serious heart defect. Colton became very sick over the next few days. He was in the NICU, battling for his life, had a stroke, multisystem organ failure, and many other complications. We were fortunate that Colton was such a fighter and that we had so many skilled doctors and nurses who did such an excellent job caring for him at this time. At 12 days old he became stable enough to have his first open heart surgery. 

He spent close to a month in the PICU recovering before we were able to take him home for a short time. Colton then had a cardiac catheterization and second open heart surgery around 7-8 months old. Even though he was much healthier and happier after his second round of procedures, Colton did need his Fontan completion - third open heart surgery - at 2 and a half years old. In all, Colton has had 3 open heart surgeries and two cardiac catheterizations. He continues to live with no left ventricle and instead, by the power of modern medicine, has had his circulation reconfigured to allow him to live and thrive today with his own heart. He continues to visit his cardiologist regularly as his type of defect requires lifelong monitoring and care, but he is a strong, energetic and smart boy who loves playing sports, being outdoors, and is an amazing human being.

We became involved with the American Heart Association through our journey with Colton to help other kids who are just like our son. We first began our involvement with the passage of the Pulse Ox Law, when Colton was just under 2 years old. We lobbied with other families in Albany to pass a law to prevent situations like ours, where children were leaving hospitals undiagnosed, with often deadly heart defects. Had our situation been different, had we not gone to the doctor that day, there was a definite possibility that our son would not be with us today. We are forever grateful to the American Heart Association, which has allowed us to continue to do outreach in our community with other families like ours and to make connections with people who are in similar situations. Not enough can be said about this organization and what it has brought to our lives.

We are so grateful every day for Colton, his courage and resilience, and our journey through life with him. He is our heart hero every day, but we are so happy to share him with all of you.

It only takes a few steps to save lives like Colton.

Sign up for the Heart Walk, step out, and share your personal why.