Dylan is an athlete, a brother, a son, and a St. Louis Cardinals baseball super-fan. Dylan is also a congenital heart defect survivor.
When Dylan was born sixteen years ago, his parents, Darren and Kara, were told that their newborn’s APGAR score was very low. This was the first sign (after a routine pregnancy) that something wasn’t right. They soon learned that their son had pulmonary atresia and had been born without a pulmonary valve.
This reality is Dylan’s “normal”. He says he doesn’t “think about it and it’s just part of who he is.”
Now, think for a moment about just one aspect of his parents’ “normal”. As a student athlete from a small town, Dylan plays sports in a variety of rural towns across Southwest Missouri. Most parents only have to think about the logistics of getting their child to a game. This is not the case for Darren and Kara. When they roll into town to cheer on their son, they are also thinking about where emergency medical help would come from if needed.
Soon after Dylan’s initial diagnosis, Kara asked her son’s physicians what his life would look like and they weren’t able to provide an answer. Now she knows. Dylan’s life is much like any other teenager. He loves to play and watch sports, he spends time with his friends and brothers, he spends time on the family farm and he is their miracle.
There have been many procedures and an open-heart surgery in Dylan’s sixteen years and he knows there will be more. In January, 2018, a stent was placed in his pulmonary artery that provided him with over 1000% more blood flow to his right lung. So you can see, research is critical to this story and how far medical technology has come since 2002.
While Dylan is living life without a pulmonary valve, the entire family has faith that the “perfect” valve is in his future. As his Mom says “.....getting along OK without it, but could you imagine if he had a valve?” Yes, we can, and so can all the researchers out there who are working in labs across the globe on behalf of kids like Dylan.
We are inspired by Dylan’s “never give-up” attitude and if he can live it, then we can strive for it everyday! #NoMoHeartDisease is a catchy hashtag, sure, but we’re serious about taking it from a goal to a fact. Join us on the journey!