When our son Ryan was born with a congenital heart defect (CHD), the world as our family knew it was turned upside down. If you didn’t read that part of our story yesterday, please go read it here and then come back, we’ll sit tight while you do!
As we became more confident in our understanding of Ryan’s condition and got used to our day-to-day with an infant with a heart condition, we found ourselves wanting to connect with other families who could relate to this new part of our lives.
We found the organization Mended Little Hearts, and immediately felt surrounded by understanding and compassion from other heart families. The organization connects families and also gives those families opportunities to take part in community events that celebrate heart warriors like our kids.
Every spring the Ohio State University’s men’s varsity soccer team plays a friendly scrimmage against the Columbus Crew in honor of former Buckeyes player Connor Senn. Connor, who had an undiagnosed heart defect, collapsed on the field after sudden cardiac arrest (SCA) during a game in September 2001 and later died.
When Ryan was five years old, Mended Little Hearts’ Columbus chapter invited us to be part of the pre-game ceremonies at that year’s Connor Senn Memorial match. Heart warriors, like Ryan, got to accompany players out on the field before the game. The kids walked out with either a member of the Crew or OSU and stood with them for introductions and the National Anthem. Ryan walked out with pro Kirk Urso.
At the time, Ryan was five years old and Kirk was a 22-year-old rookie, but the two immediately hit it off. We stood on the sidelines taking pictures and watching Ryan chat away with Kirk while the MLS midfielder listened intently to everything Ryan had to say. We commented to each other how we wished we could hear their conversation.
The National Anthem finished and Ryan came off the field sporting a big grin and carrying a soccer ball that Kirk gave him to keep as a memento. We asked Ryan what they talked about and his answer was simply, “My heart.”
Later that year, Kirk and Ryan were able to connect again at Crew Fest, a special event for season ticket holders. Ryan lit up with a big smile when he recognized Kirk and he slowly walked over to say hi. “Do you remember me?” Ryan asked. Kirk knelt down and said, “Of course, Ryan, how are you?” The look on Ryan’s face was priceless. Ryan introduced his siblings to Kirk and they all played soccer together. Our little boy had a new friend and role model.
Then one month later in August 2012, just as unexpectedly as Kirk and Ryan had become fast friends, Kirk suddenly passed away at 22 years old.
When we heard Kirk had died we somehow knew it had to be his heart. What else could take a young athlete away so suddenly? A few weeks later we heard the autopsy results and our intuition was confirmed. Kirk’s sudden cardiac death was caused by arrhythmogenic right ventricular dysplasia (ARVD), an undiagnosed heart condition. We tearfully shared the news with our children.
We’ll never forget the look on Ryan’s face nor the sound of his little voice asking, “Am I going to die, too?”
At that point we had a moment of realization – we all finally understood enough is enough. Ryan wasn’t the only one affected by congenital heart disease and our Mended Little Hearts chapter here in Ohio wasn’t unique – there are chapters all across our country supporting countless families who are affected by CHD. We understood that there are so many Ryans and Kirks out there with stories to share and we knew we had to do something.
But where should we start, and what could we do to truly make a difference? It was the beginning of a mission. Please join us again tomorrow to hear about what we’ve been up to lately and how our little family in Ohio is advocating for our heart warriors and angels across the country.
Editor’s Note: “Heart to Heart” is a 3-part blog series. Read Part 1, Ryan and Kirk’s CHD Story, and read Part 3, Ryan Goes to Washington, DC.
