From the heart

Thursday, 4/10/97

From the heart

For youngsters and adults alike who have a history of heart
disease, Camp del Corazon provides summer camp experience for a
lifetime

By Kathryn Combs

Daily Bruin Contributor

"I grow in confidence and hope knowing that there are people in
the world with obstacles facing them as I face them." — Roy
Morris.

While these words may seem like the age-old philosophy of
someone familiar with the challenges of life, few would ever guess
that they are actually the words of a 14-year-old boy suffering
from heart disease.

Roy Morris was one of the 86 participants at last year’s Camp
del Corazon, a camp designed specifically for children with a
history of heart disease.

Spanish for "from the heart," Camp del Corazon was founded in
1995 by Lisa Knight and Dr. Kevin Shannon, in response to a lack of
specialized camps for disabled children on the west coast.

Modeled after Camp Bon Coeur in Louisiana, the program provides
children with heart disease with a summer camp experience.

Camp Del Corazon, located on Catalina Island, is equipped to
provide additional medical care if needed. This allows children who
are not normally eligible for the average summer camp, because of
their medical histories and complex medication schedules, to have
the same experiences as other kids.

"No one wants to take the chance of having a child with a
pacemaker come to their camp," said Shannon. "(Children with heart
disease) have complicated medication schedules and they are at
higher risk for disastrous events."

Heart disease is rare in children and approximately 80 percent
of the kids that attend Camp del Corazon are physically normal
besides having a history of heart disease or difficulty, according
to Shannon.

However, the remaining 20 percent of these children are slightly
or significantly limited and require additional care that the
average summer camp is not prepared to provide.

Shannon said that although both the doctors and patients spend a
lot of time and effort to improve the quality of life for these
children, sometimes there’s only so much that they can do to make
their lives "normal."

"When you really look at their lives, there’s a lot of things
that (they) don’t do. (This is) not because they are physically
limited, but because of the perception they have of themselves and
the experiences that they have been through," said Shannon.

"To let them (the children) be around people that are like them
… we can make their life one step closer to being normal, which
is the goal of our profession," he added.

Approximately 40 adult volunteers staff the camp each year, and
volunteers range from doctors and nurses to adult congenital heart
disease survivors to medical students and normal camp staff.

"The thing that is unique about this camp is that as well as
volunteer physicians and staff, we invite a bunch of adults who are
congenital heart disease survivors," said Knight.

"The children get to see that ‘yes, they will grow older and
yes, they will be successful’ and that even though their lives are
limited, they will grow older," he added.

Nikki Luederitz, one of last year’s adult participants, was
diagnosed with right ventricular dysplasia at the age of 27. Now
31, Luederitz says that Camp del Corazon provides her with a place
where she can both share her experiences and difficulties with the
children and where she, too, can feel accepted as a heart disease
survivor.

"It’s a rare opportunity to be with people who understand and to
be with kids who have similar problems," said Luederitz, who said
she has had difficulty dealing with her affliction.

"It’s offered me a chance to not only give to them but to be in
a place where I feel totally accepted for what I can do as well as
what I can’t," she added.

Luederitz, currently hospitalized, said that the children help
her through tough times.

"(The children) are a huge source of inspiration for me," she
said. "As tough as I think it is, I think about the kids and it
becomes much easier because I realize that if they can do it, a
full-grown adult can."

Although Camp del Corazon is a non-profit organization, past
funding has been provided by various fund-raising luncheons and
camper sponsorships.

This year, camp organizers such as Knight and Shannon are
soliciting funding from the American Heart Association, as well as
mailing out information about the camp to potential sponsors.

Sarah Gislason, a third-year microbiology and molecular genetics
student who recently joined the volunteer ranks of Camp del
Corazon, is currently trying to gain the endorsement and support of
various UCLA sororities and fraternities.

"(Sororities and fraternities) do a lot of philanthropy work,
and a couple of them have a specific interest in cardiology and
children," said Gislason.

With the number of campers growing each year, camp organizers
for the third annual session say they need to raise approximately
$20,000 to $25,000 to accommodate the anticipated 120 kids.

By heightening interest in Camp del Corazon, organizers say that
they are hoping to raise enough money to expand the range of
activities and facilities that they are able to offer campers.

Based on the response that organizers are seeing from children
who have attended the camp, they say that even without further
expansion, the children would enjoy themselves.

"There’s no greater experience than to get back from the boat
and see these kids faces and see them run to their parents and tell
them what a great time they had," said Knight.

"Everyone has an experience that they don’t think that they were
going to have. That makes everything worthwhile," concluded
Knight.

For additional information on Camp Del Corazon Inc., please call
Lisa Knight at (310) 206-9110 or e-mail her at
[email protected] del Corazon, Inc.

Seven and eight-year-olds, from left, Robbie Hansen, Bryan
Fritts, Jay Bromley, Jacob Ducey, Jeffrey Hart and Christopher
Craig participate in last year’s Camp del Corazon.