Thanks to surgeries, pacemakers and lots of family love, boy's heart still keeps rhythm

McClatchy Newspapers (MCT) - With his brother Frank paying no mind, Gabriel Sanchez quietly steps onto the fireplace hearth behind him and leaps upon his back.

Frank barely reacts. And why should he? It's sort of like a house cat pouncing on a lion. It's typical little-brother stuff.

Well, yes and no.

Gabe certainly is the little brother in the sense that he stands 4-foot-3 and weighs 54 pounds, while Frank is 5-8 and about 180 pounds. But in age, Frank has him beat by only a matter of minutes. Gabe, Frank and their brother, Israel, are triplets, born Nov. 5, 1996.

Frank is a fraternal triplet, clearly taking after his father, Frank Sr., a bear of a construction worker with the grip to show it. Gabe and Israel _ or Izzy, as he's called _ are identical. But even between those two, there's a huge difference: Gabe was born with Shone's complex, a series of congenital anomalies in his heart. The defects include a hole in the wall that separates the heart's left and right sides, constriction of the aorta, and stenosis of the aortic and mitral valves. (Izzy also was born with a hole within his heart, but it closed on its own within his first year.)

Gabe had his first surgery at 2˝ weeks old, and it's hard for his dad and mom, Veronica, to keep track of what all he's gone through. He's had 10 or 11 surgeries, they say, and is on his fourth or fifth pacemaker. He was on heart and lung transplant lists until "the guy upstairs" intervened and those organs improved, Frank Sr. says. As babies, he and Izzy suffered seizures that doctors believed would lead to cerebral palsy or other neurological disorders, says Veronica, who works as a medical assistant and is full-time student in respiratory therapy. At 4, he nearly died of pneumonia.

So accustomed is the Modesto, Calif., boy to hearing about his roster of health problems, he can nonchalantly say things like, "I almost died four times" and "There was a doctor who wanted to pull the plug on me."

But other than his relatively small stature for a 12-year-old, his cold handshake because of circulation problems and _ when he lifts his T-shirt, a long chest-to-abdomen scar, there's nothing that immediately suggests Gabe is anything but a typical, happy boy.

He's in fifth grade at Sipherd Elementary. (His brothers are sixth-graders at Glick Middle School. Gabe was held back because the medications he's taken over the years have resulted in ADHD and mild dyslexia, his parents say.)

He enjoys playing "Rock Band" and other video games with Izzy, Frank and, sometimes, Mom and Dad. He's got a grin that just won't quit. He's taken karate lessons. He played on baseball and basketball teams until his teammates got big enough that even the minimal "contact sport" elements of those games proved too hazardous to the pacemaker implanted in his abdomen.

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Still, boys will be boys, and Frank Sr. and Veronica are hard-pressed to keep their triplets from roughhousing. "They'll try to double up on me," Frank Jr. says good-naturedly about his brothers. "They hit me and I can't hit them back."

That's because if he even taps them, they go flying, their mom says. "But these guys try to hit him so hard and he's not even budging."

Gabe loves to do things he shouldn't, like wrestling and climbing fences, Veronica says. "And then he gets hurt. And then he doesn't say anything because he doesn't want us to worry or to get upset that he was doing something he wasn't supposed to."

Last summer, Gabe's horizons broadened when he attended Camp Taylor in Livermore, Calif., and for the first time got to know other kids with heart conditions. The annual free camp includes activities such as archery, a climbing wall, a rope challenge course, heart education classes, crafts, themed events and campfires. It is named for 15-year-old Taylor Gamino of Salida, Calif., who was born with hypoplastic right heart syndrome _ or half a heart _ and in his first five years of life survived four surgeries and a stroke.

Because he was a first-timer to the weeklong camp, Gabe was allowed to bring along a sibling. For he and Izzy, each day really was a holiday. "One day, it would be Halloween and we would make Halloween cookies," Gabe says. Another day was Christmas in July, and so on, with other fun, out-of-season celebrations.

One day at camp, the kids were scaling a climbing wall. Gabe was the only child with a pacemaker in his abdomen, Veronica says, so he had to be specially padded before putting on the harness. "He was feeling kind of mad for one of the first times in his life over having to have something done differently," even among other kids with heart disease, "so someone else padded up with him," she says, looking over at Izzy.

"Israel padded himself up like he had a pacemaker in the same spot, so that Gabe wouldn't feel alone having to climb up the rock wall like that."

Camp Taylor has assisted the Sanchezes and other families in ways beyond the youth camp. Izzy and Frank Jr. went on a snow outing that also included support groups in which kids shared their thoughts on having siblings with heart disease. "They try to educate the kids also _ not just the child that actually has the heart disease," Veronica says.

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The nonprofit organization helps parents enjoy occasional nights out alone, including recently providing Veronica and Frank Sr. with movie tickets.

And Gabe was among nearly a dozen Camp Taylor kids treated to a Golden State Warriors game, at which he was selected as an honorary team member. "I got to meet the players and they gave me a jersey ... and I got to go on the jumbo screen," Gabe says before leaving the room, only to return moments later, smiling broadly and wearing a Warriors jersey bearing the number 21 and the name Turiaf. (In 2005, when he was a Los Angeles Laker, Ronny Turiaf underwent heart surgery himself, at Stanford Hospital, to repair an enlarged aortic root.)

The Sanchezes enjoy their relationship with Camp Taylor and will be volunteering at its Valentine Hearts fund-raising dinner and auction Saturday night at the DoubleTree Hotel in Modesto. Gabe has really taken a shine to Taylor Gamino, Veronica says, and the Gaminos have been terrific to Gabe. "He's a little fighter," Kimberlie Gamino wrote in an e-mail. "Most children with his rare heart defect do not survive to become teenagers."

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The Sanchezes agree that Gabe's a fighter. He used to be on eight medications but is down to one. He used to be on oxygen at home but hasn't needed it for years. His doctors at the University of California at San Francisco Medical Center see him every six months to assess his heart valves. If they ever get too leaky, the plan is to replace them with pig valves, says Veronica, though she thinks "he's going to get by without that."

She and Gabe recently did some online research to learn about how others are living with Shone's complex. "We haven't found many adults yet with his disease," she says, "so hopefully he's going to be one of the new generation of adults around."

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© 2009, The Modesto Bee (Modesto, Calif.).