I’m Aware That I’m Rare: Karen Martinez (466)

phaware global association®
7 min readApr 29, 2024

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the phaware® interview

In this episode, Karen Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections among the campers.

My name is Karen Martinez. I’m from Eastvale, California. When I was pregnant, I was diagnosed with a child with a congenital heart defect. Now, I’m the mother of a child who attends Camp del Corazon every summer. I remember getting a flyer when we were at the cardiologist’s office. I took it and put it away in my desk. A few years later, I came across it and I reached out on their website. They were having one of their first annual family get togethers over at UCLA. I had missed the deadline to RSVP for the potluck. They were so kind and open to having us still join. We went out there. We met with them. They were completely amazing, welcoming, loving from day one. After that, my daughter shortly turned seven years old when we sent her off to her first camp experience.

Camp del Corazon is a camp for kids that are born with congenital heart defects, but campers may also have other accompanying medical ailments. So it encompasses a lot of different medical issues, but primarily cardiology related diagnosis. The best way to describe it’s a summer camp for kids between the ages of 7 to 17, but Camp del Corazon also offers events throughout the entire year so that you can build a community with other families, other children that have congenital heart defects.

When you’re first diagnosed with this, I personally felt lost, completely overwhelmed. It was something that we didn’t understand. I had nobody to turn to. To have a community that not just embraced you, welcomed you, but also gave you the support in a desperate time of need, it’s just amazing. Sending her off our first year at seven years old, oh boy, many tears involved because we kept her safe, in our opinion. At seven years old we made the decision, okay, we’re going to send her off for five days. Let’s hope and pray for the best. But let me tell you, the first three days I cried, the next two days my husband cried.

Finally, when we went to the dock to pick her up, when we saw her get off that boat, a huge smile from ear to ear. The first words out of her mouth were “Mom, in 365 days, I get to go back!” She just lit up as bright as can be. It set our hearts at ease. We just knew this is where she needed to be. She started at the age of seven, and this will be her last year. In August, she’ll be turning 17, so she’ll complete 10 years total that she’s been going. It was only one year she missed because of COVID, but they did online camp.

For us, we look forward to it every single year because we know this is the five days that she gets to disconnect from the world completely, technology, all that good stuff. She gets to be in a place where she feels “normal”. She doesn’t have any limitations, any restrictions. She’s with people who understand her, who love her, who accept her for who she is. She doesn’t feel like she has to have limitations or she’s different because of her scar. We look forward to it because we’ve seen this little girl grow up from the age of seven to now have this confidence, this independence that we know is hugely in part because of Camp del Corazon.

There’s definitely a difference when I see her with her regular school friends versus her camp friends. It’s lifelong connections that she has with the kids, staff, volunteers at camp. I think it’s a unique bond that they have in what they experience, in what they have in common, that drives her to have a different connection with them. Yes, she has school friends, but there’s a unique connection that she has with her people from camp. Just to give you a quick little scenario. I remember her growing up she would never show her scar. It was this thing where she always was covered up.

One year, coming back from camp, I noticed that she started showing the scar a little bit. It wasn’t until maybe a year ago we had a discussion and she said one of her camp friends helped her understand that the scar is who she is, who makes her understand where she comes from, how she’s fought to live. It makes her unique. She embraced the scar. Even though as parents, we were telling her till we were blue in the face, right, exactly what the friend told her. But hearing it from somebody else who’s her age and from camp made her understand, wow, it does make me special. It does make me who I am. It’s something to embrace and look as beautiful and not ugly. How other people might incorporate it when they see her.

Coming across different families and different people that I’ve connected with throughout the years, I will for sure, for sure describe my faith as one of the most important things that have gotten us through. Initially, like I said, it was overwhelming getting the diagnosis, not knowing where we were headed. By far, it’s been our faith above everything else, because of God she is here. The second thing that always automatically comes out of my mouth is talking about the greatness of Camp del Corazon, because like I said, it’s not just a community, but the events and the opportunities that they allow these kids, they’re overwhelmingly beautiful.

They’re things that I can never do for my child. I can try. I advocate for her, but in all reality, it’s events, it’s speaking to other kids that are going through the same things that she’s going through that help her at the end of the day. So by far, it is one of the best things that I could always introduce another family to. I always carry flyers with me to share with people the greatness of Camp del Corazon.

In order to find Camp del Corazon, you could obviously Google search them. Their website has all the information needed for registration for camp, which is now open. If for example, you live out of state, you’re far and financially, you can’t have your child travel to attend summer camp with Camp del Corazon, they have a virtual camp set up where familes are able to participate with activities. They get a beautiful special box mailed to them prior to the event. They’ll be doing all of the activities online via Zoom. It’s just a wonderful opportunity so that if you can’t be there in person, you could do it virtually. It’s just amazing as you see everybody’s faces light up when you are doing the activities, engaging with the different groups, the breakout groups. It’s just overall fun. We sign up for it as well.

One of the things I do want to emphasize is when I sit down and imagine the cost of camp, what would it cost me to send my child to camp? I have to take into account not just the fact that there’s cardiologists there, nurses there, the feeding, the shelter, everything. It would be a crazy amount of money that would be spent sending my child here. But thank God this organization makes it where it’s free for me to send my child to summer camp. And for me as a camp mom, what I feel, and I’ve never been told I need to, but out of my heart, every single year, I fundraise in whatever way I can to turn around and be able to give back to camp.

In my heart of hearts, I feel it’s important not just to spread the word, but to keep this organization going. So we’ve gone from selling World’s Finest Chocolates to now hosting Queen Bingo Nights at Hamburger Mary’s, because we’ve made it a priority for our family to fundraise and put the name out there for Camp del Corazon. Not because it’s an obligation, but because we choose to. We truly believe in what they do and what they provide for our child.

From the bottom of my heart, I will never be able to express the gratitude I feel towards Camp del Corazon, every staff member, every volunteer, every counselor, every cardiologist, nurse, etc. Ultimately, they give to my child something I could never, as a parent as I wish I could. I’m lost for words when it comes to this, because genuinely I am so grateful. I can speak days and days of how wonderful they are, and I truly appreciate every single thing they do. They are a reason my child has become who she is.

This is Karen Martinez, and I am aware that my daughter is rare.

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phaware global association®

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