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Plucky Cody Unser, 15, gets behind the wheel as she continues to raise awareness about rare, paralyzing disease

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  • Plucky Cody Unser, 15, gets behind the wheel as she continues to raise awareness about rare, paralyzing disease

    Plucky Cody Unser, 15, gets behind the wheel as she continues to raise awareness about rare, paralyzing disease

    By Pete Herrera

    CORRALES - She has met Prince Andrew, talked stem cell research with President Bush and partied with actor Christopher Reeve.

    But what gets 15-year-old Cody Unser's adrenalin going these days is her family's mantra - getting behind the wheel of a fast car.

    "Freedom," exclaims the 5-foot, 90-pound daughter of race car driver Al Unser Jr. "When I get in the driver's seat, I feel I have total control of everything. It's a real privilege."

    And another conquest for this atypical teenager.

    For three years Cody has been in a wheelchair, paralyzed from the chest down by a rare spinal cord disease, transverse myelitis. The disease, which afflicts some 34,000 people in the United States, has turned her into a relentless crusader - for a normal life and a cure for TM.

    The high school sophomore got her driving permit this summer. She uses hand controls to drive - one is attached to the brakes, another to the accelerator.

    "She's good," said Albert, her 19-year-old brother and driving mentor. "She took over the (driving school) range course. Parallel parking, driving through cones, she was the lead car."

    "She's been driving around with her brother and anybody that will let her," said her mom, Shelley Unser.

    Cody also is a certified scuba diver and has vowed to walk again and dance at her high school prom her senior year.

    "If anybody can do it, she can," said Doug Kerr, her doctor and the director of the Transverse Myelitis Center at Johns Hopkins in Baltimore. "Cody is someone who has done extraordinary things in spite of, and maybe because of, her disability."

    Cody's mom said the chances of her walking again are not good at this point.

    "Cody's is pretty much a complete spinal cord injury," Shelley Unser said. "Even though she doesn't have a severed cord, it has suffered enough damage that it killed the cells in that area."

    Shelley Unser said the hope is that research - including work with stem cells - may someday help TM patients like Cody.

    "She's all about hope, but she knows what she's looking at," she said.

    Kerr said Cody's condition has improved slightly. About a third of the individuals stricken with transverse myelitis fully recover within the first three months; another third have some recovery; and the remaining third have permanent damage.

    "She's in a holding period," Kerr said. "The level (of paralysis) has decreased slightly. As the level lowers, it gives her a little more trunk support and stability."

    While Cody Unser continues to battle the rare disease, her father has been engulfed in his own struggles off the track. The two-time Indianapolis 500 winner was arrested last month after his girlfriend told police he had hit her and left her stranded along a highway. Last week her said he was an alcoholic and vowed he has had his last drink.

    Cody and her father have had very little contact since her parents divorced in 1999. Cody said she last saw her dad about a year ago and does not plan to contact him about his recent troubles.

    "I think it's going to take more than support for him to straighten his life out," she said. "I wish him the best, and I think it will be good for him to face it by himself."

    Her dad said he considers Cody's battle much tougher than his own.

    "Cody is climbing a way bigger mountain than I am," he said. "She is a way bigger person than I am with far more courage than I have."

    Soon after being stricken, Cody and her mother created the Cody Unser First Step Foundation, a charity organization whose goal is to increase public awareness about TM. The two and Kerr also established a medical consortium to disseminate information about the disease. The consortium, which gathers data from TM patients, now includes several medical groups and institutes nationwide.

    Shelley Unser said more than 100 TM patients attended a recent meeting of the consortium in California.

    "There was one man there who said he's had TM for 35 years and had never seen another person with that condition," she said.

    It's through the First Step Foundation that Cody had a chance to cross paths with Reeve, the president, the prince and other celebrities.

    She was part of the welcoming party when Bush visited Albuquerque last year and used the opportunity to urge his support for stem cell research.

    Reeve - who has been paralyzed since falling from a horse seven years ago - invited Cody to his birthday party last year. She met Prince Andrew when the prince was at a medical center in California looking into the latest wheelchair technology.

    "I got to tell him a little about my story and how much freedom my wheelchair has given me," Unser said.

    On Sept. 7, rock singer and Showtime comedy series host Chris Isaak will perform a benefit concert in Albuquerque for the foundation as part of the second annual Cody Unser Celebrity Golf Fiesta.

    Unser has become a polished speaker as she spreads the word about transverse myelitis. This summer she spoke before 7,000 insurance professionals at the Prudential company's national conference in Vancouver.

    "I definitely had to work at it," she says of being on the speaking circuit. "I used being nervous as an energy booster. In the beginning, I felt like I was going to throw up. Now, I just want to tell my story."

    Unser also is helping to teach other paralyzed individuals to scuba dive. Working with the New Mexico Scuba Center in Albuquerque, 10 such people have learned to scuba dive and all went to the Cayman Islands this month to do some ocean diving.

    "She has changed people's lives, opened people's eyes," Kerr said. "She's changed how thousands of people think about transverse myelitis and disability in general."

    Cody has learned to cope with her condition and to appreciate what she is able to do.

    "I do get down and depressed every now and then," she said. Then, repeating one of her favorite speaking tour kickers, she adds, "but in order to understand what's sweet, you have to taste the sour."

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    "With every scientific advance, we grow closer to unlocking the mysteries of life and creation. But what have we gained if in the process, we lose our humanity. The most powerful thing we pass along to our children may not reside in the genes, but in the soul."
    The Outer Limits(Criminal Nature)

  • #2
    Go Cody!
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.