Ethan Millerick of Turlock has no memory of his first open-heart surgery. He was 7 months old and doctors did not expect him to live.
He has since undergone two additional heart operations and endured 22 hospital stays, winning crucial battles in what his parents call "the war."
"He has the strongest will of anyone I have ever seen," said Ciara Millerick, his mother. "He is very stubborn when he decides he is or isn't going to do something."
The 8-year-old was born with Shone's syndrome, the medical term for defects on the left side of his heart.
After his birth at Memorial Medical Center in Modesto, doctors were concerned he didn't maintain body temperature or cry much. He was soon transferred to the pediatric cardiology ward at Lucile Packard Children's Hospital in Palo Alto.
The first surgery and the second, at age 2, repaired leaky heart valves so the organ pumps blood through his body despite the defects. During the most recent surgery in July, surgeons replaced his deformed aortic valve with a pig valve, his mother said.
Today, Ethan blends in with other students at Dennis Earl Elementary School, where he attends class about three hours a day and receives one-on-one tutoring.A lung condition keeps him indoors on colder days and an adult needs to watch him when he plays with other children.
Ethan can look forward to summer camp, though. A Modesto-based organization called Camp Taylor, a nonprofit, runs supervised outdoor camps for children whose heart conditions don't allow them to attend regular summer camps.
Its eighth annual Valentine Hearts dinner is Saturday at the DoubleTree Hotel to raise money to send children to camp and support other services.
The group has family camps near Fresno and Santa Cruz and a youth camp in Livermore. About 500 children and parents attend the family camps and 170 children participate in the youth camps each year, said Kimberlie Gamino, executive director of Camp Taylor.
Participants attend heart education classes and take part in such outdoor activities as swimming, arts and crafts, archery and campfire skits. Nurses, pediatricians and cardiologists donate their time.
Ethan has twice attended the family camps and especially enjoyed the carnival games, he said.
"My favorite game was Launching the Frog," he said last week, adding that no real frogs were injured during the games.
Ethan keeps in touch with fellow campers via computer, including an older boy from Marin County who served as his mentor. At the camps, the older children with heart disease are matched with younger children to show them the ropes.
"Ethan is old enough to realize he is different from other kids, and that is difficult for him," Ciara Millerick said. "When he goes to Camp Taylor, he is like the other kids. They all have scars. He is right in the mix, and that is important to him."
She and her husband, Chris Millerick, a general contractor, learned about Camp Taylor four years ago when they saw a brochure in a Palo Alto waiting room. They were thrilled the organization was close to home.
The Millericks said it helps to talk with other parents who are raising children with severe heart conditions. Camp Taylor Inc. runs support groups year-round and sends balloons to families when children are in the hospital.
"I was only 21 when I had Ethan and I felt like I had landed on another planet," Ciara Millerick said. "Nobody else could understand what I was going through."
In five years, Ethan will need another surgery to replace the heart valve with a prosthetic or perhaps a medical advancement still being developed.
The Millericks also have a 3-year-old daughter, Avery, who is in good health.
They hope that Ethan's strong will and his team of doctors will enable him to live an active life.
"Through it, you find ways to cope," Ciara Millerick said. "On top of his heart disease, I still have the challenge of parenting him. I am raising him to live to be a productive citizen in society."
Bee staff writer Ken Carlson can be reached at email@example.com or 578-2321.