Apr 30, 2024

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.
Learn more
about pulmonary hypertension trials at www.phaware.global/clinicaltrials.
Follow us on social @phaware Engage for a cure: www.phaware.global/donate
#phaware
Share your story: info@phaware.com