DATE: Sunday, July 27, 1997                 TAG: 9707250117

SECTION: DAILY BREAK             PAGE: E9   EDITION: FINAL 

COLUMN: IMPERFECT NAVIGATOR

SOURCE: ALEXANDRIA BERGER

                                            LENGTH:   76 lines

FAMILY TURNED SON'S DISABILITY INTO OPPORTUNITY TO HELP OTHERS

PAUL DUKE wanted to be a pilot. Models of F-16s and Russian MiGs hang from the ceiling of his cramped room in his parents' country home in Woodford. Instead, at age 27, Paul lives connected to a ventilator.

For the past seven years, the ``vent'' has made it possible for him to breathe. His is similar to the system used by Christopher Reeve. A hole is made in the trachea called a ``tracheostomy.'' An air hose is then inserted into the hole, continuously pumping air into the lungs by means of a battery operated power pack.

Paul's muscles, which control respiration, are no longer strong enough to sustain his life. At age 6, he was diagnosed with Duchenne Muscular Dystrophy.

A neuromuscular disease affecting males, Duchenne attacks between the ages of 2 and 6. Symptoms include frequent falling, difficulty getting up from a sitting or reclining position, and a waddling gait. Frequently a wheelchair is needed by age 12. Paul was right on schedule.

Paul doesn't remember life without illness. ``I've had time to get used to every change. It's harder when it happens all at once,'' he casually remarks. ``I get depressed, but I don't stay that way for long. I'm not scared of death. I can breathe off of the vent for 30 minutes to an hour, which I do every morning when I'm dressed.''

In the final stages of the disease, severe respiratory and heart problems occur, usually in a boy's teens or early 20s. So far, Paul has beaten the odds.

Paul and his parents, retired teachers Cheryl and Bill Duke, have turned their experiences into a unique business. After creating non-profit state-sponsored travel guides for people with disabilities (Virginia, North Carolina and New Mexico), they formed Opening Doors Inc., which has become a national winner.

The company trains hotel and entertainment industry staff in the art of serving the disabled, including the hearing, visual and mobility impaired. Clients have included Embassy Suites, Holiday Inn, Harrah's Resorts and, recently, a major entertainment complex in central Florida. The Dukes, who've helped businesses increase corporate revenues, are proof that marketing to the disabled pays.

Sitting in his electric wheelchair, which Paul controls with one finger, he dictates a letter by voice synthesizer into his computer. Paul seems like any businessman, except for the whir of his ``vent'' and his nearly motionless body.

``I think the perception is, death is preferable to life on a ventilator. We let Paul make his own choice,'' Cheryl Duke says.

Paul chose life.

Accurate protein and DNA-based carrier detection tests are available for families affected by Duchenne. Sometimes carriers can be identified by a high blood creatine kinase (CK) level, indicating that some muscle destruction is taking place even though the carrier doesn't have symptoms.

In 1986, Muscular Dystrophy Association researchers discovered the defective gene responsible. It causes a failure to produce the muscle protein dystrophin, which is lacking in boys afflicted with Duchenne.

Researchers are testing the use of Humatrope, a growth hormone, which builds muscle and bone mass, in an effort to slow muscle wasting.

Gene therapy isn't far behind. With advances in biotechnology, researchers are hoping to be able to deliver a healthy dystrophin gene into muscles.

Back in Paul's room, I notice autographed pictures of Holly Dunn, Sawyer Brown, Faith Hill and movie star Carroll O'Connor and a 1997 calendar portraying his favorite girl, model Kathy Ireland.

Paul would like to be married some day. ``I want to be able to pick my own wife,'' he says with a twinkle in his eye. ``Not someone my mother wants me to marry.''

Sounds like a typical 27-year-old bachelor. MEMO: Write to Alexandria Berger, c/o Virginian-Pilot, 150 W. Brambleton

Avenue, Norfolk, Va. 23510. ILLUSTRATION: Photo

ASSOCIATED PRESS

Bill and Cheryl Duke, left, and their children, Caitlin and Paul,

wrote ``The Virginia Travel Guide for Persons With Disabilities.''

Paul, 27, has used a wheelchair since age 12.

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