Changing Gears

Al Unser Jr.s' 12-year-old daughter Cody may have lost the use of her legs, but her spirit keeps her very much in the race.

 

Sometimes it just gets to her. Like the day this summer when she wept in her room on the family ranch and wrote on her lifeless legs, "I hate this! I hate this!" Most of the time, though, Cody Unser is tough—the way she is today during an exploratory visit to Johns Hopkins University Hospital in Baltimore. She is, after all, the 12-year-old daughter of race-car champion Al Unser Jr., and she knows that despite grim adversity you have to pull yourself out of the wreckage. "Chin up," she says with a smile, as she rolls along in her wheelchair.

 

Nearly 10 months ago, Cody—a star athlete and pupil at St. Mary’s Middle School in Albuquerque—was suddenly stricken by transverse myelitis (TM), a rare and mysterious disease that destroys the spinal-cord nerve cells. Within a day the sixth-grader was paralyzed from the chest down, as bewildered doctors struggled to make a diagnosis.

 

"It’s the scariest feeling in the world," says her father, "to look at a doctor and ask, ‘What’s happening to my child?’ and have them shrug their shoulders." Unser, 37, who is the son of superstar racer Al Unser and who just finalized his divorce from Cody’s mother, Shelley, says he is still in shock. "It should be me lying in that bed. That’s what I do for a living. I risk my life every time I get in that car."

 

Yet the little girl’s spirit burns so bright, her father calls her "my inspiration." He is not alone. All of 5 ft.and 63 lbs., Cody zooms around the family’s 27-acre ranch on a specially designed three-wheel bicycle, which has pedals where the handle bars would be on a normal bike. She has become a kind of poster child for TM, which afflicts an estimated 34,000 people in North America and leaves about one third of those permanently handicapped. With $60,000 in racetrack winnings donated by Al’s speedway colleague Bobby Labonte, the Unsers have created the Cody Unser First Step Foundation to study the disease and help find a cure. "I have the Unser name, and I’m going to use it,"says Cody, whose prognosis is still unclear. "I want to figure out why this happened to me." Neurologists across the country have rallied to her side. "Most people [with TM] feel sorry for themselves and don’t want to get involved," says Dr. Barth Green, a spinal-cord-injury expert at the University of Miami School of Medicine. "Cody isn’t ashamed she is paralyzed. She wants to change things for other kids in wheelchairs."

 

For Cody the first hint of trouble came as she was playing basketball on Feb. 5. After dashing up and down the court for about 20 minutes with her middle school team, she was suddenly floored by pain. "I got this migraine," she recalls. "On a scale of one to 10, it was 100. I was trying to catch my breath and I couldn’t." Her friends carried Cody to the locker room and gave her water. She remembers touching her leg and discovering itwas numb.

 

She was rushed by ambulance to the Presbyterian Hospital emergency room, where she was evaluated and released. "We thought she was dehydrated," says Shelley, who happened to be in Phoenix and learned of Cody’s plight by phone. "So we kept telling her to drink lots of liquids."

 

The next morning, Cody woke up and couldn’t feel her legs or urinate. The family physician immediately checked her back into the hospital, while Shelley and Al, who been training in Homestead, Fla., rushed to her bedside.Dr. Green, the racing circuit’s long-time neurosurgeon received a call from Unser’s racing pals and quickly brought in neurosurgeon Edward Benzel, then of the University of New Mexico Medical Center. "We took Cody to UNMMC to make sure it wasn’t a blood clot or she something vascular, "says Shelley. "The doctors did," more spinal taps, narrowing it down to Guillain-Barre syndrome, TM or MS.

Cody’s disease continued to advance, even as she was taken in late March to the Barrow Institute Neurological at St. Joseph’s Medical Center in Phoenix. It was an emotional time for all of us," says her father. "At Barrow they switched medicines because the steroids weren’t working. She was starting to lose feeling and strength in her chest." Doctors finally gave her a high dose of gamma globulin, which calms the immune system." "We had thought she was stabilized," says Unser, but she hadn’t been. She could have lost the use of both her arms and her legs.

 

Cody’s grandfather Al Unser says that "only the Man Upstairs knows why [Cody contracted TM]. I keep hoping He’ll undo it."The fact is, doctors can, only speculate on what caused Cody’s TM, which often develops among patients with viral and bacterial infections. They think it may have been triggered by a reaction to a hepatitis vaccination received at the end of January 1999. "It is known that vaccinations can cause neurological diseases says Dr. Douglas Kerr, codirector of Johns Hopkins’s TM Center.

 

Cody stayed at Barrow until early April, then began rehabilitation at UNMMC. Today she does outpatient rehab five days a week: stretching and weight-training for the upper body, as well as electrical stimulation for strengthening her legs, abs and back. Being home-schooled by a retired teacher, Cody has the run of the Unser spread, which looks out on the Rio Grande and has been refitted to her needs. The pool, bathrooms and entries of the single-story, 6,0 00-sq.-ft. house have been converted for wheelchair access. There is a weight room and sauna, and if she wants to ride one of the horses in the barn, there’s a special saddle. And she has hope: Many doctors, among them Kerr and Green, believe developing technology will eventually allow new cells to be transplanted into the spinal cord. Cody could regain some function in her legs over the next 5 to 10 years.

 

Still, compared to other children she has met, Cody is blessed—she has resources and people who love her including her siblings Al, 17, Shannon, 11, and Joseph, 2. When word first got out that she had been hospitalized, she was deluged with 200 stuffed animals by her father’s fans. It bothered her, though, that other kids in the hospital were not so fortunate. "I’d hear them crying," she says. "They’d be in some empty room with maybe one balloon. I started giving them my stuffed toys." Once home, Cody plunged back into her life. "When I got home, I had my friends over right away because I missed them so much," she says. She especially missed her pal Danielle Marquez, also 12. As Danielle listens, Cody tells how Danielle acted the first time she slept over and had to empty Cody’s urinal. "She was like, ‘Gross!’" says Cody. "I said, ‘It’s just your best friend’s pee.’"

 

Danielle giggles, and soon the pair are telling story after story—like the time Cody fell on the floor while putting on her leg braces and the two of them couldn’t budge her, so they just lay there laughing. "I think of her as the same person," says Danielle. "She is just sitting down most of the time."

 

At that, dinner is called; Danielle grabs the handlebars of Cody’s chair and zooms her from the room.

• William Plummer

• Jane Sims Podesta in Baltimore and Zelie Pollon in Albuquerque

128 11/29/99 PEOPLE