Bismarck Tribune

By TONY SPILDEBy TONY SPILDE

Gary Koch died for 37 minutes.

He was supposed to stay that way. Walk into the light, grab a harp and all that.

But he didn't.

Koch chose life.

Twenty-one years later, he's fighting for it again. And his family is asking for help.

A unique fundraiser began Saturday that allows donors to golf for Koch the only way he can - online. It runs through the end of the month.

Koch, a Bismarck native, was born with a heart problem called aortic stenosis. The valve between the lower chamber of his heart and its main outlet, the aorta, was severely blocked and required clearing for him to live.

Doctors performed the surgery, successfully, when Koch was 3 months old. Forty-five minutes afterward, he went into cardiac arrest and had a stroke. Clinically, Koch died.

He was revived, but the complications - including a major lack of oxygen to his brain - created permanent side-effects. Koch developed scoliosis and a muscular disease that mimics cerebral palsy. The latter has him confined to a wheelchair, unable to communicate many thoughts through words.

But it is the former that is threatening his life now.

When Koch sits in a chair and looks straight ahead, it isn't straight ahead at all. If you think of it like a clock, when Koch's feet and legs are at 12, his right shoulder is pointing to 10. His spine is shaped like an "S," and is putting tremendous pressure on his organs. Without surgery, Koch will die.

Again.

"Without intervention, scoliosis will be his demise," Koch's mother and caregiver, Kay Grenz-Koch, said. "The procedure is a major risk, given his cardiac history. But if he could survive that heart surgery, he can survive this."

Grenz-Koch, who lives with Koch in Dallas now, said the estimated cost of the surgery is up to $750,000. She wants to have it performed by a specialist out of state, which means Koch's Medicaid won't pick up the tab, she said.

While lamenting that fact one day, a friend of Grenz-Koch's came up with an idea for the online fundraiser.

At www.helpgary.com, participants can learn more about Koch and sign up for the golf tournament. Tickets are $10, which can be purchased with a credit card via PayPal. Additionally, donations will be taken at Capital Credit Union, in Mandan.

After downloading the game, players have a month to complete their round. It takes a half-hour or so to play 18 holes solo, longer if you're in a foursome with friends. Prizes are awarded those with the lowest scores. You can play as many times as you like, for $10 each round.

"I know Gary can't play golf in real life, because of his disability," Grenz-Koch said. "A dear friend of mine came up with this idea. It's so unique."

Proceeds from the fundraiser will help offset the costs of Koch's surgery, which likely will take place this fall in California. Prior to that, Koch wants to visit his grandmother, Annie Grenz, who lives in Mandan. He particularly wants to sink his teeth into his most favorite meal - one of Annie's homemade hamburgers.

Although he had difficulty communicating, during a recent phone conversation Koch squealed with delight at the thought of Grandma's burgers.

"He's such a likeable child," Annie Grenz said. "He's smart, if he could just put the words to his thoughts. I hope to see him sometime soon."

Grenz said Koch is as well-adjusted as he is because her daughter has spent so much time with him. Since Koch was born, he's been the center of Grenz-Koch's world, she said.

"Gary was like the center of attention from the start," Grenz-Koch said. "Everything we did as a family was centered around the needs of Gary for many years. That's hard on siblings."

Koch has two sisters. Tonia Marez, 28, lives in Montana. Sherrie Alcantar, 23, lives in San Diego.

Grenz-Koch divorced the children's father in 1998. She and Koch live together in Dallas, where she works three days a week as an accountant. On those work days, her aunt, Elma Gooding, takes care of Koch. The rest of the time, she's there with him.

"Momma-momma-momma," he called to her during an interview last week, one of the few words he can say. She went to help him.

And that's how life is for Kay and Gary.

"That's the only way I've known him, so to me it's normal," she said. "They told me he'd die before he was 6 months old. After his cardiac arrest and stroke, we left (the hospital) with the real sincere and compassionate recommendation to not expect that Gary will survive, but to enjoy every minute we would have with him. Gary has come too far for me to just sign off and let just anyone do the surgery. I would feel much better getting care at a specialty clinic. I have lived Gary for 21 years."

And Gary, somehow, has lived life.

Approaching the clubhouse now, he'd like to go out for another round.

(Reach reporter Tony Spilde at 250-8260 or tony.spilde@;bismarcktribune.com.)