Mom: Do you want to say what activities you are doing this year? You’ve done running club, now you’re doing a basketball club, so you’re able to play sports and do gym and ride your bike and swim.

Alexandra: Well, after school I get to do the sports, and in the summer I get to do swimming and in the summer we get to do biking. One time, this winter, we went biking because it was like really hot. I like swimming and biking most.

 – Alexandra, age 8, and her mother, Pacemaker


Emma: One time I had SVT at soccer camp—we were playing the game “steal the bacon” and I had just gotten the ball. My coaches were always fighting like, who got to hold me upside-down, so when I did have it, I was like, “Hang me upside-down!” My coach hung me upside-down and then the other coach came over and was like, “Dude, I thought we had agreed I got to do it first!”

Mom: And I thought the director of the camp was yelling at him like, “What are you doing?”

Emma: Yeah. My coach always said to me, “You know, I can just hang you upside-down, I have a reason for it.”

 – Emma, age 9, and her mother, SVT


I did have to quit contact sports once they got too competitive around fourth grade. I did soccer for a really long time, and I really liked it. My dad always noticed that on the soccer field I was really fast and I remember my doctor was into track and knew a lot about how track works in and stuff, so he supported me in doing it, which was really cool. So that’s kind of how I got into it, and my doctor’s been really supportive of me doing it. Like, my junior year after a meet, my relay team won and he sent me an email congratulating me and I didn’t even tell him I was running, he was just following the results.

I think I always kind of knew I’d probably have to stop contact sports at some point. I mean, when I did do soccer, I’d have to wear pads so that if I got hit with a ball, I wouldn’t get hurt. If I’m just doing it casually, I can go kick a soccer ball around. It’s like with a lot of sports—I’ve gone to a sleep-away camp for ten summers, I was a camper and then a counselor, and I can do sports there when it’s playing basketball or playing lacrosse casually, but it’s when it’s super competitive and people are shoving each other that I am not supposed to do it.

I think that I’ve been doing track for so long that I kind of know my body. When I first got my last pacemaker, the settings were a little bit off on it. When I would run sometimes, I would get really lightheaded and I knew something wasn’t right. I’d be running and all of a sudden I’d just feel really out of it. So I knew that wasn’t normal. I think after a month of this happening I saw my doctor and they changed the settings on my pacemaker and it was fine, but I did know that that wasn’t- it wasn’t just me being tired, it was something that shouldn’t be happening. But I’ve never actually fainted or nothing really bad has ever happened.

 – Emily, age 19, Pacemaker



The only thing that my heart surgery affected majorly was work, because I couldn’t physically do anything after surgery. Other than that, I waited until the summer to have it done, so it wouldn’t interfere with school.

To be honest, I played soccer the season after I had surgery, but in reality, it was like I didn’t because I wasn’t physically where I was. My position was a sweeper and I was basically the best one before I left—I’m not trying to toot my own horn. But coming back from surgery, there was a noticeable difference between where I was before and where I was after.

 – James, age 20, Anomalous Coronary Artery