Night Helps Raise Money to Dream

Sometimes, when he dreams, Steven Schaad, 8, is tearing down the street, free as the wind, running like the other kids in the neighborhood.

Until he was 4, Steven could do most of the things his pals could do--run, hop, pedal, climb.

No longer. A victim of Duchenne muscular dystrophy--a progressive, fatal disease that destroys muscle tissue--Steven now struggles to walk. And when he goes out to play, it’s his little sister, Samantha, 5, who jumps on the Big Wheel and rips down the sidewalk. Steven slips into an electric wheelchair and tries to keep up.

“He wishes it would go faster,” said Elaine Schaad, 34, as she and her husband, Greg, watched their brown-eyed son play on a recent morning at their Garden Grove home.

In the Schaad household, much of life has become about wishing: wishing for a cure for muscular dystrophy. Wishing the government would subsidize research. Wishing people wouldn’t stare, ask questions, when Steven--who, by all appearances, is a perfectly healthy boy--goes on outings in his wheelchair. Wishing they had a consoling answer when their wistful son asks, “Do you get to live life more than once?”

“What can we say?” asked Greg Schaad, 34. “What he was asking, of course, was ‘Do I get another shot at this?’ ”

The Schaads would like to tell Steven he will run again. But by next year, they believe he will no longer be able to walk.

“The experts say a cure for MD is 10 years away,” Greg said. “For us, that might be too late.”

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On Saturday, the Schaads joined their son--who is a goodwill ambassador for the Muscular Dystrophy Assn. of Orange County--at a Newport Beach benefit that netted about $50,000 for programs for patients with MD.

Dressed in a tux, bow tie and gleaming patent leather shoes, Steven deftly guided his “power chair” (as the family calls it) around the Twin Palms restaurant, cruising the silent auction tables, posing for pictures with friends.

Among those at his side was his adoring grandmother, Valene Jenkins, mother of Elaine Schaad. “What would you like, Steven?” Jenkins asked, surveying auction items ranging from baby dolls to sports outings. Steven smiled and nodded shyly at one of the sports packages.

During an interview, Jenkins called muscular dystrophy, which strikes boys, “a devastating disease.”

“He is too precious, too young. I would trade places with him in an instant,” she said.

“I’ve seen him go from a little boy who was running . . . to someone who is losing the capability to lift a glass . . . who has to be carried.

“Through it all, we just pull together, do everything we can to raise money. Our only hope is that there is going to be a cure.”

Medical therapy for muscular dystrophy patients is five to 10 years away, said Joan Rovegno, associate director of field organization for the Western United States region of the Muscular Dystrophy Assn.

“In 1986, [researchers] discovered the gene that causes Duchenne muscular dystrophy. It was the first genetic breakthrough of any agency in the field of genetics,” she said.

Since then, it has been discovered that MD patients lack the protein dystrophin. “When that’s missing, the muscle atrophies,” Rovegno explained. “That’s why these young men lose their muscle function, which eventually affects the heart, lungs.”

Researchers can now produce dystrophin synthetically. “But the muscle structure is so vast, you can’t just inject it. They tried that . . . it didn’t work,” Rovegno said.

Now, researchers are using a virus--stripped of its negative effects--to deliver dystrophin to the Duchenne gene.

“The good news,” Rovegno said, “is that we just announced a $3-million, FDA-approved human trial at three major universities, beginning this fall. The hope is that the virus will bring dystrophin to the muscles and regenerate them. It may not cure the muscles that are already atrophied, but it could stop the progression of the disease.”

Information: (714) 550-0161.

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Mark your calendar: Four local arts organizations are producing a “Masquerade for the Arts” benefit Oct. 31 at the Orange County Museum of Art in Newport Beach. Along with the museum, South Coast Repertory, the Orange County Performing Arts Center and the Pacific Symphony Orchestra will stage the premiere event, modeled after the popular Black and White Ball in San Francisco. The benefit is designed to encourage arts awareness among young professionals, ages 20 to 40. Net proceeds will be used to provide funds for each organization’s programs for young professionals. Information: (714) 556-2122, Ext. 546.