2025 Capital Region Heart Walk & Run

Darin, 15, was born with Hypoplastic Left Heart Syndrome. He loves to bowl, swim, go fishing, play video games, watch WWE and hang out with his family and friends. Darin has always been a very happy and fun kid despite his medical issues. He actually smiles and laughs during bloodwork. Nineteen weeks into his mom’s pregnancy, Darin was diagnosed with HLHS, had a leaky tricuspid valve and significant kidney problems.

Darin was born August 6, 2009, full term, weighing 10lbs, 2oz! Darin’s first of three surgeries was supposed to be right away but was delayed because of his kidney issues. At two weeks old, he had the first open-heart surgery, the Norwood Procedure. Because the left side of his heart had not developed properly, his left ventricle was virtually non-existent, and blood wasn’t flowing normally to the aorta. The procedure reconstructed the aorta, connected it to the right ventricle and inserted a shunt to provide blood flow to the lungs. Essentially, the right ventricle was made to do the work of the left.

In November of 2009, Darin’s oxygen levels dropped, and he was readmitted to the PICU because the shunt was failing. It was time for the second open-heart surgery, the Hemi-Fontan. In this procedure the shunt was removed and the large vein, the superior vena cava, was connected to Darin’s lung arteries to increase pulmonary blood flow and oxygen levels.

In June of 2010, Darin again started to not feel well. His leaky tricuspid valve needed repair, but instead, a mechanical tricuspid valve was put in place. Although this meant that Darin would be on blood thinners for the rest of his life, he felt amazing after this surgery.

In November of 2014, Darin had his third open-heart surgery, the Fontan. During this surgery, the inferior vena cava, a large vein that carries de-oxygenated blood from the lower body to the heart, is disconnected from the heart and attached to the pulmonary artery.

Darin had a pacemaker placed in 2010 and then another one in 2017. He also has had many heart catheterizations along the way.

Darin is an amazing kid, always smiling and quite the jokester. He is also very thoughtful and kind. He helps his big sister Lexie, who has autism, whenever needed. Darin really enjoys being part of organizations like the Cardiac Kids, Make-A-Wish and Circle of Champs. Darin, his Dad, his Aunt Stacey and Uncle Mike attend the Heart Walk every year and we hope to make an even larger team in 2025!

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

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