On February 14, 2019 this year.   Alex Schroeter, who was diagnosed with Long QT Syndrome in 2016 had the pleasure of being a speaker at the Jessie’s Heart Leadership Conference.  I, his father was proud standing on the stage with Alex and his mother as he shared his experience with the event of his diagnosis. Nervous, of course, before going up before the largest audience of his life, he wondered aloud would he do well.  He was afraid he might stutter. He took a break from the room while he waited his turn to speak and returned just before we all took the stage.

There, he described the sensation he felt as the world went black and as he regained consciousness, he primarily noticed the person that was charged with keeping the sun off of him, didn’t do so well at that job. He shared that at the ED, doctors noticed something wrong with his ECD and that he had another ambulance ride to another hospital where he was tentatively diagnosed with Long QT and how it was confirmed through genetic testing.  Without a break in his speech he described how going on beta-blockers turned him into a zombie and how in a conversation with his doctor, he decided to get a procedure on his heart.

The procedure was successful, and as he describes it, “I have a small risk of something happening, but I can do almost whatever I want.” He has been released to full activity as long as he is with a friend when he snowboards, or mountain bikes or is off in a place where otherwise he would be alone.  He came off the stage and smiled. “That was easy.”

Most children survive all but the most serious of CHD’s compared to even 20 years ago.   And now the conversation and the perspective of these courageous kids and young men and women is not will they survive but how they will thrive.  That is true leadership from those that face the most difficult of challenges early in life. Care for these strong kids is changing as the medical community, their families and friends work to make care a conversation.  This draws the challenges families face into new stages and draws Jessie’s Heart with them. After all Alex’s nervousness, and then perfection on stage, he wanted to know if there were any pictures of him speaking so he could SnapChat his friends.  There were of course; and he did. He is living his life in a conscious way that is an example to both his friends and adults. He is thankful for help from some of his friends at Jessie’s Heart and looking forward to downhill mountain biking this summer.