Oct 18, 2022
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.
Roslyn discusses the work of Camp del Corazon and its lasting impact on children and families affected by CHD and Pulmonary Hypertension.
Don't miss CDC's upcoming Family Festival (FAMfest FUNdraiser) October 29th in North Hollywood, CA. You can also participate in the Online Auction (Oct 22-29, 2022). Learn more at: https://www.campdelcorazon.org/famfest @campdelcorazon
Hi, 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.
So as I've mentioned, Camp del Corazon could not be possible
without donations from people like you. We really want to expand
our community. FamFest fundraiser is
Camp del Corazon's fall event. It's a 5K. There'll be some carnival
games. It's really a way to join with the community. You can meet
other people from camp, whether that's counselors or other campers
and their families. That's being held on Saturday, October 29th in
North Hollywood Park. There's also an online auction. If you go to
the Camp del Corazon website, that will be held the week prior, so
October 22nd through the 29th, where you can find some really great
goodies to bid on and help out camp to get more kids to camp.
My name is Roslyn Rivera and I'm aware that I'm rare.
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