I’m Aware That I’m Rare: Camp de Corazon Summer Camp 2023 (399)

The phaware® interview

Roslyn Rivera, RN, BSN is the Fetal and Pediatric Cardiology Outpatient Nurse Coordinator at the UCLA Children’s Heart Center. Since 2013, Roslyn has volunteered with Camp del Corazon, a nonprofit organization offering year-round activities for children and young adults with CHD. She holds the role of Nurse Coordinator and as an Advisor for their adult CHD program called PACE.

In this episode, Roslyn discusses the work of Camp del Corazon and its lasting impact on children and families affected by CHD and Pulmonary Hypertension.

PH kiddos and parents — Sign up now for @campdelcorazon Summer Camp 2023 (Aug 17–29). Learn more at: https://www.campdelcorazon.org/camp

I’m Roslyn Rivera. I’m a pediatric cardiology nurse. I currently work at UCLA in Mattel Children’s Hospital. I’ve been a nurse for about 17 years now. I’ve always worked in pediatrics, specifically critical care, so in the pediatric ICU and with cardiology patients. So I have an extensive background in pediatric cardiology and pulmonology care. I would love to talk to you today about Camp del Corazon, which is one of the volunteer aspects of my nursing career.

Camp del Corazon is a non-profit organization that provides summer camp and really year round opportunities for children and families with congenital heart disease. They have a summer camp every summer where there are hundreds of children that come out. It’s a medically safe camp. Most of the time these children are deemed a little bit too sick to attend a normal children’s summer camp, so this is their opportunity to experience summer camp; riding in kayaks on the ocean and climbing rock walls and having those opportunities because it is medically safe. There are nurses and doctors there to help care for them.

Camp del Corazon does offer year round opportunities, including educational opportunities for families and events for the CHD community to get together. They also have a young adult program for young adults who are 18 to 25. It’s called Progressive Adult Cardiac Experience or PACE for short. We do sometimes monthly events. We have a virtual book club. We’ve had beach days. We’ve had movie nights. We also have an annual camping trip that’s every October where we take these young adults camping in tents at campsite just to experience and learn new skills.

Camp del Corazon was started in 1995 by Dr. Kevin Shannon and his nurse Lisa Knight at UCLA. The reason they started this camp is because they had a patient who was a teenager who was really nervous about his procedures, really embarrassed about the scars he had from his heart surgeries and he didn’t know anyone else like him. Dr. Shannon and Lisa Knight decided he needs to meet other kids like him. How can we do that? How can we facilitate that happening?

Ao they just created this camp. They decided we’re going to have a small camp with some of our patients from UCLA and we’ll get them together and we’ll go to a campsite and have a few days. It was really bare bones and just kind of started really small and now we’re serving nearly 450 children every year at summer camp. It was really their vision to provide a place for children who have complex heart conditions, to be able to meet other kids like them and to not be nervous or anxious about going to the doctor. A place for them to really just be kids, because oftentimes they are in the hospital for several months out of the year of have major surgery. It’s difficult for them to find a place where their families feel safe for them to do the activities that we do at camp, whether that’s even just hiking around or swimming in the ocean. Sometimes we’ve had kids that have never even seen the ocean before, come to camp and be able to swim in it. It’s really life changing.

One of the best things about camp is the community. The children that attend make some of the best friends of their whole life, friends that they keep in touch with. We have counselors that were campers back in the early 90s. Some of them are still best friends with the kids they met when they were seven, eight years old in the mid 90s. Camp del Corazon has really created such a glorious community where kids with heart disease can really just share their experiences together. It really goes for the families as well. Camp really wants to offer support for families of these children, because it’s can be distressing to have a child who is so sick. The fear of the unknown is a reality for these families. So being able to provide this camp community is really provide a lot of hope for our families.

There is always the camper who is crying at the dock as we are about to get them on a boat to separate them from their parents. They don’t want to leave and they don’t want to go somewhere foreign. They don’t know where they’re going. Within a few hours, they’re on the island with other kids their age running around laughing and have completely forgotten that they are missing home. It’s just the environment that camp really provides them with the activities that they may not necessarily have at home. We have archery, like none of these kids have ever held a bow and arrow before. I mean, I haven’t until I went to camp as an adult, as a counselor, as a nurse.

We have a saying at camp, it’s challenge by choice. That simply means we’re going to present these new activities to you and challenges and you can decide if you want to do them or not. It can be as much as you’re staring at the rock wall and you’re terrified of getting up off the ground, because you’re maybe afraid of heights. So maybe the challenge for you this year is to just put on the harness and maybe just touch the wall. Next year you can challenge yourself to do a little bit more to actually climb that wall just a little bit and just see how far you can push yourself knowing that we are here to support you.

One thing that I tell my patients and their parents when they’re in clinic when I’m talking about camp, because I want all the kids to come, is I really just talk to the kid and I show them the pamphlet, I show them the video of what camp looks like, the activities we do. I explain how fun it is and how they’re going to meet someone just like them. Then I look at the parent and I say, “it’s very medically safe.” We have at minimum two doctors there at all times, they are pediatric cardiologists. Each cabin of campers has its own med nurse. So that’s about one med nurse for every eight campers for the most part.

There’s also other counselors there and a good portion of them, I’d say at least a third, do have some kind of medical background. Whether that’s an EMT paramedic, maybe they’re a phlebotomist, they have some kind of medical background. So that’s extra eyes for us as the med team that is there in the island to make sure that we’re keeping the campers safe and healthy. With the medications, we administer them all the ways that the parents and the doctors have prescribed them to be. We’re definitely making sure that the kids that are there are keeping up with their medical regimen as well. That being said, definitely there to have fun.

Camp del Corazon is a nonprofit. That being said, it is funded through donations. They have several fundraisers there throughout the year. They have a big gala that’s usually every April. They have a golf tournament, as well, that’s sometime in the late spring. We have a FamFest that is usually every fall, usually in October. Those are just some of the big fundraisers. We do have some smaller fundraisers throughout the year to allow these children to be able to attend this camp for free. It is completely free for the parents. They do not pay anything for them to come, because we want it to be an opportunity for everyone to attend. Especially the children that may not have another place to go, another camp where they are going to be able to be cared for in the way they need to in order to have such a great experience.

Camp del Corazon isn’t just based out of UCLA anymore. It has expanded tremendously over the past two decades. We have campers that have come from out of state, from Arizona, from places in Boston, from Florida. We’ve had campers that have come from Canada. We actually have quite a few that come together, usually they fly on down. Really we’ve gone international. During our virtual camp, we had campers that were from South America and Puerto Rico who joined us. That was something really incredible and really special and it really expanded our own volunteer counselors. Most of those campers, English was not their first language. We had a special section that was speaking Spanish to them during our virtual camp. Being able to provide something like that to them that they had definitely not experienced before, it’s really unique. It’s fun to say that Camp del Corazon is now international. One of those campers from Peru, I believe, did actually attend camp in person a few years ago. It was just something that she was glowing about. It was such a great experience for her.

I’ve talked a lot about Dr. Shannon and Lisa Knight and their vision in creating this tremendous camp. Unfortunately, we lost Lisa a few years ago. She lost a battle to cancer and with that we definitely did not lose any hope in keeping this camp alive. Her daughter, Chrissy, otherwise known as Penny Lane, really took hold of this camp. While those are very large footsteps to follow, she has continued camp the way that her mother Lisa would want. She is out there as the face of camp and has been involved since her early 20s, so for several years herself. It’s really inspiring to see how Chrissy has really taken on the legacy of Lisa to continue this camp and continue with the attitude of, we can do this. How can we do this? We will do this.

I know I’ve talked a lot about heart disease and how Camp del Corazon is here to support families of children with heart disease, but we have expanded and are including patients with pulmonary hypertension as well. In general, in my clinical experience, children with pulmonary hypertension are seen by cardiologists. That’s one of the necessities for campers to attend camp is to be seen by a cardiologist. With our pulmonary hypertension patients who are seeing cardiologists, they’re definitely welcome and we are excited to have them at camp. As a nurse, I know that pulmonary hypertension is quite a debilitating disease. We want these children who again, don’t really have a great place to go and be a kid, to be able to experience that and to meet other children who are similar to them and to just have the opportunity to participate in activities just like any other kid, just like their peers.

My name is Roslyn Rivera and I’m aware that I’m rare.

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Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global