Parents go all out to raise money for son's treatment Insurance won't cover $150,000 procedure

December 04, 1997|By Mary Gail Hare | Mary Gail Hare,SUN STAFF

When their 30-year-old son was diagnosed with a debilitating illness, Ed and Alana Combs might have had a brief minute of self-pity, but it faded quickly.

The Westminster couple immediately went to work, trying to raise the $150,000 needed to pay for an experimental treatment that could prolong life and advance research into Becker muscular dystrophy. The progressive, genetic disease usually affects young adult men, destroying muscles and eventually the lungs. Life expectancy is about 40 years.

In a few weeks, the family has organized Angels for Andy, a benefit auction, dinner and entertainment. It starts at 6 p.m. Saturday at Four Seasons Sports Complex in Hampstead. The space, items, auctioneering, food and festivities have been donated.

"I feel they are angels," said Andrew "Andy" Combs, a chiropractor working in Jackson, Tenn. "It is providential the way my parents and so many people are helping. I am really thankful for all they are doing. There is so much support."

Alana Combs knows no guarantees come with the costly treatment, but "I have strong hope. We believe and we are using our energies to call in every resource to get him there. The kindnesses shown us are multiplying like loaves and fishes."

Soon after doctors confirmed Andy Combs' diagnosis two months ago, he learned he was a candidate for myoblast transfer therapy, an experimental muscle-transplant procedure developed by the Cell Therapy Research Foundation in Memphis, Tenn.

'No other game in town'

"I knew I was looking at muscular dystrophy, the worst type," said Andy Combs, husband of Sandy and father of 21-month-old Nathan. "The only thing available for me is this treatment. There is really no other game in town. I have read the studies and am optimistic it will help."

A team of three orthopedic surgeons will inject 179 needles into Combs' muscles. Each injection will contain billions of muscle cells from healthy donors. The only side effect will be soreness from the injections, Andy Combs said.

"The healthy cells actually start growing and the muscles regenerate," said Ed Combs, who with his family has become conversant on dystrophy and current research.

The father wanted to be a donor, but his son could not resist telling him he was too old. "The study demands growing muscles, not ones atrophied by age," the elder Combs said.

Andy Combs is an excellent candidate for the surgery, said his father. Researchers were looking for an older patient who was not so debilitated by the disease.

'Still walking, working'

"The sooner they can do this procedure, the better," Andy Combs said. "The more debilitated you are, the harder it is to come back. I am still walking and still working."

The foundation will start growing the cells next week to prepare for the surgery on Jan. 22. Although the U.S. Food and Drug Administration has approved the procedure, it is not covered by his insurance. But Andy Combs said it is worth the financial burden.

"It could stop the progression of the disease," he said. "Even if it does nothing for me, I will be no worse for it, and I could be helping somebody else in the future."

As their son prepares for the surgery, the parents are organizing the fund-raiser. Area businesses donated more than 50 items and services. Four Seasons is providing a large room; friends from Memphis shipped gallons of barbecue sauce and fixings for the dinner; and Continental Airlines, for whom Ed Combs is a pilot, contributed a pair of round-trip tickets to anywhere in the United States.

Letter campaign

"There is no one person we have asked who hasn't given us something," Ed Combs said.

Those who could not give money gave what they had -- a cord of wood, a side of beef, piano lessons.

Andy's brother Nathan, a seminary student in Dallas, gave a Brooks Robinson autographed baseball. Andy's 81-year-old grandmother is organizing a benefit dinner at her retirement complex in California.

Alana Combs launched a letter campaign, mailing about 400 with details of Andy's illness and copies of his message to family and friends. His thigh muscles have withered, but his faith in the future has not wavered, she said.

"Mom, this can be done with God's grace," Andy wrote to his parents, after learning he had to raise such a large sum. "I kiss continually the hand that has thus afflicted me."

Humbling response

The response to their efforts has been both gratifying and humbling, the couple said. Bryan Watkins, 12, whose father is flying to Carroll County from Etna Green, Ind., to run the auction, wrote to say he was giving all the money he had in the bank.

At the end of the letter, Bryan wrote, "That is all I can do. It is in God's hands now."

"That is what I am clinging to now, God's hands," Mrs. Combs said.

Four Seasons is at 2710 Hampstead Mexico Road (Route 482). Information: 410-867-5133. Contributions can be mailed to Cell Therapy Research Foundation, 1770 Moriah Woods Blvd., Memphis, Tenn. 38117-7126.

Pub Date: 12/04/97

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