B&B's Pediatric Heart Awareness Campaign

A Note from Colleen:

Mark was diagnosed with cardiomyopathy, both systolic and diastolic heart failure, and a bicuspid valve in January 2022. The weeks following were a whirlwind of doctor's appointments, new medications, blood draws, and educating ourselves on his prognosis. Little did we know that our battle was just beginning.

The following month, we were hit with the news that both of our youngest kids had aneurysms growing on their aortic valves. These aneurysms are a direct correlation to the bicuspid valve issue that Mark is currently battling. Once again, we found ourselves in a state of panic. A few weeks into processing this information, I received a call from the pediatric cardiologist at work. He informed me that he had taken Johnny's echo scan images to a peer panel review and that he believed that Johnny had a rare disorder called Coronary Artery Ectasia.

Per the cardiologist, Johnny was pulled from all physical activity. His original scan showed a massive dilation of his right coronary artery that could rupture from too much thoracic pressure. We were also informed that Johnny is at an extremely high risk for heart attacks and strokes, even at his young age. He will be at risk for his entire life. Two weeks later, an artery scan confirmed the diagnosis and our world crumbled yet again.

Mark and I would spend the next month researching coronary artery ectasia. Our only goal was to get Johnny into the best hands possible. Since his disease is so rare, there were only two hospitals that we felt comfortable with. We landed at Cincinnati Children's. After a 5-hour appointment, their scans would show not a massive dilation but rather a moderate one, which lifted Johnny's physical restrictions. He will always be at risk of heart attack and strokes, but we have to continue to trust in God.

Johnny now has a wonderful cardiologist, a cardiomyopathy specialist, and a coronary artery specialist. Together the three teams have developed a wonderful care plan for him. They also urged us to get Tommy into their team, which we did. They are currently monitoring Tommy's aneurysm, which has grown slightly over the 6-month period. He also has developed some left-side dilation, which will be monitored and treated as soon as it affects his EF and/or systolic output.

Through all of this, we truly have felt moments of overwhelming gratitude, knowing that through Mark's heart, a father's love, we found these issues. We have the opportunity to help them live as long as possible because we caught it early.

Message from Leslie and Kevin:

Here is where we all come in. Ultimately, our goal is to raise pediatric heart disease awareness and the importance of early detection. So, we are partnering with Play Heart Smart and sponsoring a mobile heart scan on February 18, 2023. We hope to collect donations to cover the cost of any child between the ages of 10-18 to get a heart scan. The scans are $50 per child. Any amount of donation is greatly appreciated. Any additional money raised, on top of covering the heart scans, will be donated to Cincinnati Children's Hospital in honor of Johnny and Tommy.