Camp kids leave the heart disease at home

0 Comments | Oakland Tribune, Jun 25, 2006 | by Michelle Fitzhugh-Craig, STAFF WRITER

When he was five days old, Kimberley Gamino's son had open-heart surgery.

Now 12, Taylor, who has hypo-plastic right heart syndrome, or half a heart, has survived four surgeries and a stroke. A few years ago, Gamino began looking for a program where Taylor could interact with other kids with heart disease.

She couldn't find one.

So the Salida mother of three young boys decided to create her own -- a week-long camping experience for youth with heart disease.

"Normally a child with heart disease and the scars that you have from heart disease and open heart surgery, you're embarrassed," Gamino says. "Here, everyone is the same ... they meet kids like themselves for the very first time in their lives and that empowers them with so much self-esteem."

Nestled in the hills of Livermore overlooking the Valley, Camp Taylor offers swimming, arts and crafts, horseback riding, rock climbing and more to boys and girls who might not otherwise have the opportunity due to their illness. And the best thing is it's free.

"For the first time in their lives they're told 'Go ahead, you can do it,'" Gamino says, noting this year's theme is "Blazing Trails," which offers educational and fun activities based on the Old West and pioneer days. "Camp is about everything they can do, not their limitations."

The week-long adventure also teaches kids about their disease, what they are going through now and will in the future to put them at ease. This year's youth camp, which ends Friday, is hosting 75 kids between the ages of seven and 12. It is held at the Camp Arroyo Environmental Education Center.

Camper Mary Michelle Firth, 12, of Garden Valley, says she is excited about attending her third youth camp because "it makes me joyful." Kenny Reed of Valley Springs is adamant about what he looks forward to.

"My first thing I like is having fun, my second is swimming and my third is seeing my best buddies," says the 8-year-old.

Camp namesake Taylor Gamino says he's been able to not only meet other kids like him, but to help them.

"Meeting new people with similar diseases ... you get to hear what other people feel and sometimes it's similar to what you feel about your heart disease and it boosts your confidence a lot during camp," Taylor adds.

Kids from as far away as New Hampshire have visited Camp Taylor since it began four years ago. Some schedule their surgeries and vacations around camp dates. The Taylor family, which includes Gamino's husband Michael, a military reservist, also hosts a teen camp for older children and family camp, which allows families to share like experiences with one another.

"It's good thing to go because you need to be close with other families who've been through the same thing," says Christie Martin of Fremont. Her son, Jeremy, is attending Camp Taylor for the first time this week. "Anyone who has a heart child should experience it."

Jeremy, 8, sitting in the camp's amphitheater waiting to learn how to make sarsaparilla, says he is excited about being away from home for the first time as a "big boy." Although he is flying solo, Jeremy's dad, Randall, is nearby as a camp counselor, which parents are invited to do, but not over their child's group.

Youth are encouraged and permitted to do many of the things any summer camper does, however, their safety and health is a priority.

There is a medical director, several registered nurses, physicians and EMT's who remain at the camp 24/7. This not only ensures the camper's health is closely monitored, but also puts parents' minds at ease about sending their child away. For most moms and dads, the past 10 or so years have been focused on keeping their child healthy and alive.

According to the March of Dimes organization, congenital heart disease is the No. 1 defect in infants. There was a time when the life expectancy for these children was grim.

"Twenty, thirty years ago kids were told they couldn't have kids, wouldn't play sports, wouldn't even live long ... that has changed," says camp medical director Kavin Desai, M.D. "These kids are going to become productive members of society and we need to be able to accommodate them."

Desai, who sees several of the children, including Taylor, as patients, is a pediatric cardiologist at Kaiser Permanente's Hayward/ Fremont Medical Centers and at the Lucile Packard Children's Hospital at Stanford University.

"There's no question of the value of this camp in many, many ways. From a medical standpoint ... it's really great," Desai says, referring to the educational component. "From a psycho-social- development standpoint, it's even more important.

Camp Taylor is free of charge to all campers and any healthy siblings who wish to attend with their brother or sister. The same holds true for family camps. Gamino says the camps are funded through donations from businesses and the community.

It was a donation that brought Bruce Gordo to Camp Taylor. A few years ago, he had just lost his mother to heart bypass surgery and gone through the same procedure himself. Close to retirement, he had the "classic wake-up call" and when his son told him about a woman who was raising funds for the camp, he wrote a check. He quickly realized that wasn't enough. He began volunteering at the camp and today is the director.