Nikolas Ortiz was 2 when his parents remember him first uttering the phrase that has become a rallying cry for the cause they hold close to their hearts.
"Run, run, run!"
When Mom, Dad or another family member went for a run or entered a race, Nikolas would encourage them with those words. Now, they're hoping to give him support by doing just that – run, run, run! – in Sunday's 26th annual California International Marathon.
Nate and Jodi Ortiz, Nikolas' parents, and three of Nate's sisters, an uncle and a co-worker plan to run the 26.2 miles from near Folsom Dam to a block from the steps of the state Capitol wearing bright yellow T-shirts that say "Team run, run, run! for Nikolas."
Eight other family members and friends are scheduled to run in the CIM's four-person relay as part of the Ortizes' effort to raise awareness and funds for the Epilepsy Foundation in honor of Nikolas, 5, who was diagnosed with epilepsy when he was 2 1/2.
"We knew there were different (fundraising) groups," Nate Ortiz said. "We wanted something that was passionate to our hearts. We just decided we were going to do it.
"The next thing you know, my sisters kind of got on board, then my uncle did. … It kind of just grew."
The Ortizes, who live in Elk Grove with Nikolas and their 3 1/2-year-old daughter Angelina, didn't know much about epilepsy until their son's diagnosis prompted a crash course in online research.
Their son had three febrile seizures – convulsions brought on by a fever – about six months apart before he was diagnosed with epilepsy. Nikolas had a 20-minute seizure not accompanied by fever last April but has not had one since.
They emphasize he's still the same thoughtful, athletic, articulate, good-natured kid. The trick for the Ortizes is to keep Nikolas safe but not rob him of his confidence as he grows up.
"As he gets older, he's 10 years old and he's crossing the street, he's out and about, things just change," Nate Ortiz said. "You can't say, 'OK, Nikolas, go swimming,' if he has a seizure in the pool.
"That's the hardest (thing) is finding that happy medium."
Said Jodi Ortiz: "I try not to be Mother Hen. Let's be proactive and let's get involved. Through this we've learned a lot … Hopefully, we're bringing more awareness to what epilepsy is."
And what it is not.
Epilepsy is the third-most common neurological disorder, affecting an estimated 3 million Americans, including 140,000 Northern Californians, according to the Epilepsy Foundation. For 70 percent of those with epilepsy, a cause of their seizures is not identified.
Nikolas falls into that category. The Ortizes also never know when Nikolas, who is on anti-seizure medication, might have another seizure.
"It's just kind of living day to day, thinking, 'I hope this isn't the day,' " Jodi Ortiz said. "You don't know when it's going to happen. You always live in that limbo of uncertainty."
Nate Ortiz, a project coordinator for the California Conservation Corps, said they've worked hard to educate workers at Nikolas' preschool, family members and anyone else who might watch him what to do if another seizure occurs.
The Ortizes hope raising awareness will help erase the stigma they feel comes with epilepsy.
"They're still just normal people," said Jodi Ortiz, who works for a commercial insurance company. "I don't think it is understood."
Said Nate Ortiz: "We've always approached it as one of his hurdles of life. So far he's doing a great job."
And the Ortizes intend for that to continue.
"He's at a very crucial age for his development, his confidence or his developing a lack of confidence," Nate Ortiz said. "It's reassuring him to let him know this is fine and this is something we can work with."
The runners on Team Ortiz won't be the only ones wearing the bright yellow 'Team Run, run, run! for Nikolas' T-shirts. Volunteers at the Fair Oaks Fleet Feet aid station near the 8.5-mile mark also plan to have them on to promote the cause.
"She (Jodi Ortiz) told me what was going on with her son; everyone here, our hearts went out to them," said store manager Kristy Laing, who donated 40 T-shirts.
"They're such a bright yellow. … It's going to really call out to what's going on and what they're doing."
This will be the fourth marathon for Nate Ortiz, 38, and the second for Jodi Ortiz, 40. The plan is for Nikolas to greet them near the finish line, their mission to "run, run, run!" complete.
"I'm hoping to get him a shirt saying, 'I am run, run, run!' " Jodi Ortiz said. "That's our goal, to find one."
After that, the Ortizes are thinking of starting a local race to raise money for epilepsy research.
"He (Nikolas) is the engine behind this whole venture," Nate Ortiz said. "It started off real small. … It's kind of waving out. Just imagine what we can do next."
Call The Bee's John Schumacher, (916) 326-5523.
