Martial arts kid still kicking after rare brain condition

Steven Spears emerged from the dressing room, tugging at his ceremonial gi.

He made it no more than two steps onto the mat at Edwards Black Belt Academy when a friend stopped him in his tracks.

“Did you forget to do your hair?” asked Mia Andreatta, well aware of the cameras in the crowd. Steven is one of four new black belts at Edwards BBA, a small studio tucked away in an industrial park near Crows Landing Road.

Brilliant at nearly every sport he attempts (the list includes rodeo, wrestling and now martial arts), Steven spun and darted back into the dressing room, splashing his locks with water.

The gi, the black belt and the hair are important pieces to the Steven Spears story. The 14-year-old is a newly minted first-degree black belt in taekwondo and a state champion seven times over.

On this day, the medals are splayed across the glass countertops, 14 in all. It’s an impressive haul, a collection that Steven says fuels his Olympic dream. He hopes to compete for a roster spot in Tokyo in 2020.

The defining plot line, though, stretches across the side of his skull, a lumpy, bending seam that once allowed doctors access to his brain and a tangled mess of veins.

Rare condition nearly took his life

Steven has endured two major surgeries, the result of five arteriovenous malformation brain ruptures as a 5-year-old.

AVM affects less than 1 percent of the population, and in most cases presents itself later in life. Steven’s ruptures occurred when smaller veins pinched off an artery. The veins backed up and eventually burst like poor plumbing.

Steven’s memory of the ruptures is spotty. He remembers being at summer school at Sundale Elementary in Tulare on July 12, 2006. A kid stood atop a table, throwing a tantrum. And there was Steven, complaining of a headache, an episode worsened by the screaming child. Eventually, the pain made him sick.

“I threw up in a garbage can,” he said.

If only that was the brunt of it. Steven was rushed to Tulare Regional Medical Center, where his parents, Nanette and Jeff Spears, later learned staff had placed their only son on death watch. One question haunted them during those long, lonely hours: How many kids survive such a large, traumatic brain bleed?

That answer wouldn’t come easily. Jeff says he signed paperwork three times in a 24-hour span, acknowledging his son was dying.

Steven, it seemed, was the classic underdog. He would require surgeries at hospitals hundreds of miles apart.

The first surgery took place at Children’s Hospital Central California in Madera, but the surgeon was limited. “The AVMs were too far into the brain for her to go,” Jeff said.

Steven was sent to UCSF Medical Center in San Francisco, where three more procedures left Nanette and Jeff with a flickering hope. Their son was in a medically induced coma and given a wait-and-see warning.

“It was devastating because I couldn’t help him,” Nanette said. “I was helpless, but at the same time, the weird thing is I felt at peace. God was in control.

“I prayed for a miracle. There were moments of desperation and utter fear; moments of peace and panic.”

Steven emerged from his coma paralyzed and unable to speak. “The doctors told my parents that this was the best they could expect,” he said, “and that I would be a vegetable for the rest of my life.”

Miraculously, Steven was walking and talking just two weeks later – albeit in small steps and sentences – all before his sixth birthday.

“He’s our blessing from God,” said Jeff, a preacher who relocated to Hughson Full Gospel Assembly of God three years ago.

Brain a ‘jumbled deck of cards’

But the ruptures left Steven’s brain a jumbled deck of cards. That’s the example Jeff used when addressing Steven’s classmates upon his son’s return to school.

Jeff asked the first-graders to imagine their brains were a deck of cards in sequential order and arranged by suit. Steven’s brain had those same 52 cards, Jeff told the children, only they had been shuffled with each surgery.

Steven’s task was to put the deck back in order. Until then, even mundane exercises, such as recall and recognition, would be difficult. For the longest time, Steven confused McDonald’s for Starbucks, the color blue for red, and vice versa.

Physically, the Spears family searched for ways to put their son – a gifted athlete even at a young age – back together, as well.

His road to recovery began in rodeo, a rough-and-rugged sport some would deem too dangerous for a child with such an extensive medical file. Steven began by twirling a rope faster and higher until he was able to knock the hat off his own head.

“I must have hit myself a million times,” he chuckled.

Steven would win the 2007 Littlest Cowboy award, as presented by the Junior Christian Cowboy Association of Laton, and go on to compete in calf roping in 2008-09.

“That was such a big moment,” Nanette said.

One burned into the memory of many.

Jeanette Cardoza was working in the JCCA secretary’s trailer in 2007 when Jeff burst through the door, overwhelmed by his son’s rodeo championship.

“He said, ‘Praise the Lord. They said that little boy would never walk or talk again,’” Cardoza said. “Praise the Lord, indeed.”

Steven also wrestled for a youth wrestling program in Exeter and could have competed at the state level, Nanette said.

It was all preparation for his launch into taekwondo.

Dreams grow big with taekwondo

Steven arrived at Edwards BBA lacking flexibility and the confidence to defend himself against bullies. (His last name made him a target for Britney Spears jokes, he said, and the rodeo buckles drew the ire of others, too.)

Slowly, like his work with the rodeo rope, Steven grew stronger and more sure of his place in the sport and the world around him. Within three years, he was the 2014 American Taekwondo Association’s California state champion in creative forms.

“We were told to show (the moves) to him, not tell him,” said Edwards BBA co-owner and instructor Denise Edwards, a third-degree black belt. “He would have to physically see it.”

Steven added to his medal haul this year, winning ATA state titles in traditional weapons, sparring, creative weapons, extreme weapons and creative forms in May. The ribbons also feature commemorative pins, acknowledging Steven ranks among the top 10 in the state in eight disciplines. He also owns three titles from the 2014 world championships and is fluent with nunchucks, bo staff, fighting sticks and sais.

“I feel like he’s totally conquered all of his physical limitations through taekwondo,” said Nanette, a survivor herself. She’ll celebrate her fifth year in remission after beating breast cancer.

Steven’s hope is to pay it forward. He wants to start an after-school program centered around taekwondo and gymnastics. He envisions an 8,000-square-foot building – roughly eight times the size of Edwards BBA – divided equally between each activity. A bus would transport kids from school to the facility each day.

“He realizes the importance of life,” Nanette said, “and the importance of making a difference. It’s about being the best you can possibly be.”

Running his fingers through his hair, searching through the curls for the scar, Steven issued a new plot line for his story. Sunday marks the ninth anniversary of his ruptures.

“God kept me here for a reason,” he said, “to inspire others.”

This story was originally published July 10, 2015 at 9:28 PM with the headline "Martial arts kid still kicking after rare brain condition."