Alexandra: So when you first get there it’s on Friday night and you set up your bunks after dinner and then you have a campfire and roast marshmallows. And the next day there’s lots of activities like swimming, zip lining, and I always do the zip-lining every year. I’ve been going three years. I know some people, but they’re not from near here, I just met them at camp. There’s archery, there’s an art center where you get to make stuff and dancing. And then on Saturday night there’s a carnival and you dress up funny and you get these tokens and at the end, everybody gets a prize. A lot of kids with pacemakers go to the camp.

Mom: Was that the first time you ever met anybody else who had a pacemaker?

Alexandra: Yeah. I kind of wish that people who I know, like at school, would have a pacemaker so they could go with me Pacemaker camp. And on Sunday mornings we get ice cream for breakfast!

Mom: That’s why you decided to go! When she saw that she said, “I’m going.”

 – Alexandra, age 8, and her mother, Pacemaker


Leah: I’m going to camp this summer! It’s a heart camp.

Mom: A camp about an hour away from us for heart kids and this is the first year. She’s going for ten nights.

Leah: I’m excited! A lot. I do Archery, swimming, I don’t know what else.

Dad: I think they ride horses.

Leah: Oh yeah, horseback riding!

Mom: Yeah, I’m not too sure how I feel about that, but it’s fine I’m sure. It makes me a little nervous. It’s a camp for just kids with heart defects. I think there are about five or six kids within a year or two of her age that’s in her group of girls, and then they’ll have an older group, and then the boys’ two different groups. I think there are about 20 to 30 kids there, and they have a full time nurse that’s there that makes sure that they’re safe and she’ll have a great time.

Leah:  I want it to be the end of July already, but I don’t, because I don’t want to go back to school.

Mom: She also participated in Girls on the Run this past fall through spring. It’s a program where they’re incorporating exercise and also addressing issues that start coming about at this age, you know, mean girl issues. So she participated in her first and probably only 5K, so she ran a three mile race.

Leah: In 55 minutes!

Mom: In 55 minutes she ran that three miles and we were very proud of her because it was not an easy thing for her to complete those three miles. Her heart was not very happy with her about it.

Leah: I said, “I’m never doing that again!”

Mom: She did great. She walked most of it, but she did great completing that 5K, which I was very impressed considering her heart defect that she wanted to do it and she did it.

Leah: And I didn’t throw up!

Mom: We try to live a very normal life. She does as much physical activity as her body allows, and we just try to have a lot of fun and really live life to its fullest.

 – Leah, age 10, and her mother, HLHS


I like to go to heart camp. It was fun. You hike and rock climb. I haven’t met other kids with heart conditions other than at camp—somebody who actually lives in the same town I know, they have TOF too. But they don’t have pulmonary atresia. We didn’t really talk about our hearts, not a lot. We all knew we had them. I started last year. I’m ten and you have to be eight. I started when I was nine.

 – Austin, age 10, TOF


I’ve gone to a couple of pacemaker camps, which has been really cool. I don’t go anymore, but it’s a weekend with just kids with pacemakers.  That was really helpful for me, it was a good experience. I think I started going when I was in sixth grade, I went for like four or five years.

I definitely made friends who also had pacemakers. Some of them were younger than me, I know when I got older, like the last summer I was there, I actually hung out with a lot of the younger kids who had just gotten pacemakers, and it was cool to just hang out with them. Talking with younger kids at pacemaker camp was cool because they definitely identified with some of my scars, which all the kids at camp did, but I think it’s cool for little kids to sometimes see someone older who they can relate to.

One thing that’s interesting about this pacemaker camp is that there’s people who just have a pacemaker and that’s their only condition, and there are people who have a lot of other stuff going on, so there’s a really wide range. It was a good eye-opener for me, because it was a good way to relate to people, but also realize that I am really fortunate that I can still do a lot of things. And I think the good thing about the camp too is that when you’re there, you can do some things that you can’t always do in the real world. Like we would play soccer and stuff because no one’s going to kick the ball too hard, and no one’s too uptight about anything because there’s all these doctors there anyway. If something happens, you’re in good hands I guess.

I also went to a sleep-away camp for ten years, it’s an all-girls camp. It’s not affiliated with Children’s or heart camps. It was cool that I was able to do that because I know a lot of people aren’t able to do normal camps. The only thing I can’t do there is water skiing, because water skiing is one of those things where it probably would be fine, but they just didn’t want me to do it when I was at camp. That and horseback riding because they don’t want me to get bucked off the horse. My little sister has asked me so many times if I want to go horseback riding with her, and she doesn’t understand, I can’t go horseback riding.

I think that going to sleep-away camp really helped me because I was really self-conscious about wearing a two piece bathing suit, but at camp everyone wore a two piece bathing suit. That’s a big thing at my camp, people with different body sizes would wear them, and it became very apparent to me that no one was going to really care about my scars. I think I used to be a lot more self-conscious about my scars than I am now.

 – Emily, age 19, Pacemaker