Fighting muscular dystrophy more than labor of love for Jerry Lewis

By Joe Schoenmann

Sunday, Aug. 29, 2010 | 2:01 a.m.

For 60 years, Jerry Lewis has led the charge against an insidious children’s disease that slowly kills muscle-controlling nerves, then takes the life.

In those years, he said he has raised $2.4 billion (“that’s with a B, kid”) for research and therapy and aid for those stricken with muscular dystrophy and other neuromuscular diseases.

His track record of telethon fundraising is nothing short of astounding. “It will never be done again,” he said.

At 84, Lewis is worried for his children. The nation is still reeling from the Great Recession. Even with a mild recovery, some economists fear a “double dip,” meaning another tumble into recession could be on the way.

People are tighter with their donated dollars. In June, the Giving USA Foundation reported that philanthropy in America in 2009 fell 3.9 percent, the second-steepest drop ever.

The Muscular Dystrophy Association telethon, held annually over Labor Day weekend, has seen an increase in donations in every year but a few, including 2009, when the $60.5 million raised was almost $5 million less than 2008’s total.

In Nevada, the MDA has contributed $900,000 over five years to services for people suffering from the diseases, and the state has two MDA clinics that provide diagnostics and long-term clinical care.

Lewis is well aware of the country’s economic woes. Asked if he’s worried, he shrugs: “It was bad last year and look what we did.”

His belief that the telethon will succeed is born of his strong will and fierce dedication to fighting muscular dystrophy and the other diseases the association researches.

Where that dedication stems from — how Lewis became involved in the cause — he has never revealed, and most reporters know not to ask.

He just keeps marching on, even with the changing economy, even without the support of stars who once clamored to be seen on the telethon.

“You hear the list of performers this year — Brad (he searches for a word) Stump, Helen Utch, Ruth Belmenent,” he said. “And these people are some of the best talent in America. But it’s a big difference” from big-name stars.

“People don’t want to do a telethon anymore because they have to get off their butt, get on a plane, come here and do it,” he said. “But I don’t want them when they don’t want to, because they don’t come with the right attitude. If they come out of pressure, they’re no good to me.”

Lewis has lost the weight gained from steroid use that helped him fight pulmonary fibrosis years ago. His hair is grayer, but it’s there and he has the hairline of a teenager.

“I’m vertical,” he said with a laugh.

He maintains an emotional connection to afflicted children and adults. For all the people he’s known who have died, he admits he’s unable to erect an emotional barrier.

Making that point, his face loses color in telling the story of Brian, who, for seven months, Lewis visited three or more times a week during the boy’s stay in a hospital. Just before Lewis flew to Australia this summer, 11-year-old Brian told him he loved Australian rugby. So Lewis got a football signed to Brian from an Australian rugby team.

“I come back and I go from the airport to the hospital, I go up to the third floor — and he died that morning,” Lewis said. “And I’m standing in the lobby of the hospital with my football, and I’m not sure what to do with myself. My lungs went bad. I had to sit down. I was so (expletive) angry. It shook the hell out of me. I have three (deaths) a week for 60 years, for Christ’s sake, you get used to it. No, you don’t!”

That night at home, he said his wife, Sam, asked him why he was so upset.

“And I said, ‘I don’t know. I really don’t know.’ I was so shattered like I had never been before. He was just so ... upbeat. He looked so healthy. Before I left, the doctors said he was doing well. I thought it was unfair. I thought it was dirty.”

Muscular dystrophy is a genetic disorder that strikes children but can also develop in adults. Although many forms of muscular dystrophy have been identified, the most common in children is called Duchenne muscular dystrophy, affecting one in every 3,500 births, according to the National Institute of Neurological Disorders and Stroke. Few stricken with it live beyond their late teens or early 20s. About 1 million people in the United States have some form of muscular dystrophy.

Lewis can recite facts and details of the disease at will. He grimaces in telling Brian’s story.

But he’ll use all of it, he said, to power through the telethon at South Point this year.

“I’ll muster whatever theatrical know with all I have and I’ll lock in Brian’s picture right here,” he says, pointing to his forehead. “I’ve been doing it for 60 years. I’ll turn that negative into a positive the best I can, because this is for those children.”