Cincinnati Children's Blog

Heart to Heart: Ryan Goes to Washington, DC – Part 3

Heart to Heart: Ryan Goes to Washington, DC – Part 3

Today – March 6 – is a special day for us. It is our son Ryan’s birthday (see Part 1 of our story here). We’re excited to share the final part of this story today because it turns out this date was important for Ryan’s friend Kirk (read Part 2 here to learn about Kirk) as well. The first two posts are important – please do read them – we’ll see you back here in a few minutes!

After Kirk’s death, the Columbus Crew really kick started our family’s CHD advocacy and awareness efforts when they contacted us about being interviewed for Kirk’s memoir.

We were also contacted by Kirk’s mother, Sandy. Apparently the picture of Ryan and Kirk together on the field was found saved on Kirk’s computer. Before he died, Kirk told his mom about Ryan’s “heart problems” and when Sandy saw the picture on his computer, she wanted to meet the little boy herself. Incredibly, we found out that Kirk and Ryan share the same birthday – March 6.

We feel like the chance encounter that brought together Ryan and Kirk – two heart warriors – was meant to be and we’re working to make sure that Kirk’s legacy lives on. We’re proud supporters of the Kirk Urso Memorial Fund, which benefits youth heart health research and programming. The fund is supported by proceeds from the sale of the book in addition to other charitable contributions.

Our experiences with Kirk and his family, the Columbus Crew, and the Mended Little Hearts organization showed us just how incredibly powerful it can be to share your story with others. It’s proven how a story can snowball, touch lives and change minds. So last month, our family traveled to Washington, D.C. to be part of the 2016 Congenital Heart Legislative Conference and let Ryan continue sharing his story, himself.

Ryan spoke with Ohio politicians Sen. Sherrod Brown, Rep. Steve Chabot (pictured right), Sen. Rob Portman and Rep. Bob Gibbs. He told them about his medical challenges and his friend Kirk, and encouraged them to pass the Congenital Heart Defects Reauthorization Act. The bill will increase funding to the Center for Disease Control (CDC) and the National Institutes of Health (NIH) for research, data collection and awareness of congenital heart disease.

Together, we can conquer CHD by spreading awareness and advocating for our heart warriors and angels. Our biggest takeaway from this experience was meeting amazing heart families from all over the United States and coming together for one thing – to help conquer congenital heart defects. It was another experience our family will never forget and we plan to attend again in the future. Anything to help find a cure for CHD.

The final chapter of Kirk’s memoir, a book written by Steve Sirk and titled, Kirk Urso: Forever Massive, tells Kirk and Ryan’s story. While it is the last chapter in Kirk’s printed life story, we find comfort knowing that every time we share Ryan’s story and Kirk’s as part of it, we are adding new chapters that would make Kirk proud.

Editor’s Note: “Heart to Heart” is a 3-part blog series. Read Part 1, Ryan and Kirk’s CHD Story, and read Part 2, Ryan Meets Kirk Urso

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