Kimberlie Gamino has been fighting for her son, Taylor, since he was five days old and had his first open-heart surgery. Now 20, Taylor, who has hypo-plastic right heart syndrome, or half a heart, has survived multiple surgeries. Gamino not only supported Taylor through his health problems, but also made it possible for him to interact with other kids going through the same things.
When a younger Taylor wanted to go to camp like all the other kids his age, his mom made that happen the only way she could: she created Camp Taylor.
Since its founding in 2002, the camp for children with heart disease and their families has provided not only traditional camp activities but also bonding experiences for kids who deal with life and death on a daily basis.
"They live their lives differently than you and I," said Gamino about the children who attend Camp Taylor. "They don't have a lot of time, so they keep things in perspective.
"They live more than us with whole hearts."
The need for a place like Camp Taylor has grown exponentially since Gamino started the camp for her own son. The reason for growth is a happy one: more children born with heart disease are surviving to live into their teens and adulthood.
As these children grow up, most having endured multiple life-threatening surgeries, the need for a community of others who know what they've gone through also grows.
"This is the first generation to survive heart defects," Gamino said. "People didn't know what their needs would be. They need someone to fight their battles; we're at the forefront of that."
The support starts at the week-long camp, a miracle in itself as most of the children would be turned away from traditional camps due to their health. Camp Taylor is staffed with a complete team of medical professionals, including pediatric cardiologists, pediatricians, registered nurses, paramedics, an onsite ambulance and a fully equipped cardiac infirmary.
"We have a better pediatric cardiology staff than most hospitals. That's what it takes; that's what we do," Gamino said.
While the campers do traditional outdoor activities like swimming and archery, they also have group sessions where they can talk about their heart disease and how it affects their lives. And the friends they make at camp are often friends for life.
"They come to camp for a week, but 359 days of the year they have this incredible network of friends they can tap into when they go into the hospital or when a problem comes up at school," Gamino said. "It's much more than camp for us."
Camp Taylor made a difference in Hughson native Ryan Lonergan's life. Back in 2004, Lonergan thought he was like any other boy on his basketball team. Tall and lanky, he already had dreams of playing in the NBA one day. On Dec. 23, 2004, those dreams came to an abrupt end when Lonergan collapsed during basketball practice. Unlike most athletes who go down due to dehydration or heat exhaustion, Lonergan was having a heart attack.
An off-duty paramedic and emergency medical technician were able to revive Lonergan and he was eventually diagnosed with a congenital anomalous coronary artery. While he got used to new limitations due to his disease, he also had to deal with being "that one kid who died" at a very small school. One thing that helped was getting involved with Camp Taylor, he said.
"It makes a humungous difference," Lonergan said. "It's really beneficial to be around other people who have experienced what you have...You're not the only one who hates going to the hospital or worries you're going to die."Camp Taylor's most famous advocate
Camp Taylor is an organization close to San Francisco 49ers quarterback and Turlock native Colin Kaepernick's heart. Over 30 years ago his parents, Rick and Teresa Kaepernick, became one of the thousands of families who suffered the loss of a child due to congenital heart defects — not once, but twice in a two year span.
A year after their loss, the Kaepernicks were blessed with the birth of a healthy daughter, whom they named Devon. Devon joined her big brother, Kyle, who was born healthy before his two brothers with heart defects.
The Kaepernicks went on with life, never forgetting their sons and the struggles they went through. When Devon was six years old, however, both Rick and Teresa decided their family was not quite complete. Not wanting to risk having another child born with heart defects, they decided to adopt. And that is when Colin came into their lives.
Colin formed a tight bond with Camp Taylor since being drafted by the 49ers in 2011. Shortly after receiving his first NFL paycheck, Kaepernick quietly donated money to Camp Taylor in honor of his parents.
He has since supported the organization with not only funding, but by visiting the campers and raising awareness for heart disease.
“This is something that has touched my heart because I probably wouldn’t be in this situation, I wouldn’t be with my family, if they hadn’t lost two kids to heart defects. So I think this is a big role in my life and where I’m at and how I’ve got here and I’m just blessed to be a part of it,” Kaepernick said during the 2013 All Odds Golf Tournament to benefit Camp Taylor.
"For the children, camp is all about acceptance and fitting in... what Colin added to that is if someone at that scale cares about us this much, someone we see on TV, this big football player, this is acceptance on a big level," said Gamino.Camp Taylor growing along with need
As more children survive heart defects and find out about Camp Taylor through the efforts of advocates, like Kaepernick, the more demand there is for camp.
"Our biggest challenge is finding facilities," said Gamino.
Last year, Camp Taylor held sessions at the California State University, Stanislaus campus in an effort to serve more families.
"Camp is wherever we are. It's about being together. We can fulfill our mission on a college campus or camp ground...it's about doing something you don't normally do," said Gamino.
While the fun and support of camp can be recreated anywhere, Camp Taylor is looking to find a permanent home — and soon.
"Our ultimate goal is to build our own camp facility. We hope to have the property within a year," said Gamino.
Gamino is looking for 10 to 20 acres in the greater Modesto area, a location that would keep the camp under 2,000 elevation (due to health concerns for the campers), and within 15 minutes of a major emergency room.
"If we build the camp, the sky's the limit — we'll be running 80 more camps," said Gamino.