Charity born out of family crisis

Barber helps others after customers pitched in for son’s surgery
Monday, February 13, 2006 | 12:00 a.m. CST; updated 4:47 p.m. CDT, Tuesday, July 15, 2008

Jim Edwards is a barber — a smart, 59-year-old businessman who cuts the hair of a lot of other smart businessmen.

Over the years, his Boonville shop, Timeless Creations, has been a community forum for the kind of diverse topics that are commonly discussed in barbershops: weather, news, sports and family. So when his son, Tim, found out he had a rare liver disease and needed a transplant, his customers rallied around the shop and the Edwards family, offering prayer and emotional support.

By the time his son had received his new liver and the crisis passed, Jim Edwards had come up with an idea for a charity that would help people like Tim and their families. And he found the people he needed to make his venture, Lights for Life, a success — the judge, the CPA, the grocer, the minister and the advertising agent — beneath the hair he had been trimming.

How Lights for Life would raise money was an easy question for Jim Edwards, who has sold fireworks on the Fourth of July for 15 years. He plans to recruit young men and women from church youth groups to operate his fireworks stands, with the proceeds — minus expenses and other costs — going into a fund to help Missourians in need of organ transplants cover their medical costs. The need is certainly there. As of Feb. 3, 2006, there were 2,036 Missourians in need of an organ transplants and 188 in need of a liver transplant, according to the United Network for Organ Sharing.

Jim Edwards said he named his charity Lights for Life because “whenever you look up in the air on the Fourth of July, those lights are saving somebody’s life.”

Having never started a nonprofit, Jim Edwards wove Lights for Life together from the strands of his experience: born from a family ordeal, nurtured in his barbershop, supported by trusted friends, financed by fireworks and sustained by his Christian faith. As for the need, organ transplants are among the more difficult and expensive medical procedures available today. In most transplant situations, a person with health insurance will have around 90 percent of the surgery covered by insurance. But the remaining 10 percent, plus other nonmedical expenses, is enough to put a real strain on a family’s budget.

For five years, Jim Edwards’ 36-year-old son, had an itch he couldn’t scratch — “everywhere, all of the time,” Tim Edwards said in an e-mail. When he finally sought medical attention early last year, he was diagnosed with a rare liver condition called primary sclerosing cholangitis, or PSC, which causes the bile that his liver produces to pool instead of emptying into his gut.

“The odds of him getting that are about the same as you winning the lottery,” Jim Edwards says of the condition.

Tim Edwards needed a new liver, but his doctor told him it could be as many as 20 years before a deceased donor could offer one. Livers can also be taken from living donors because of the organ’s unique ability to regenerate. As long as a surgeon leaves a quarter of the donor’s liver, it has a good chance of growing back.

Though living donors are much harder to come by than deceased ones, Tim Edwards was lucky. His brother Brian, 34, offered to donate part of his liver, and the surgery was successfully performed on June 3 at the University of Nebraska Medical Center in Omaha.

Tim Edwards was on his way back to a relatively normal life. All that was left was to pay the bill, which he expects to reach $800,000 by the time it’s all said and done. Much of the cost will be covered by health insurance offered through his job as a baseball and basketball coach at Hughesville High School.

However, his out-of-pocket expenses were still significant enough that the small town of Hughesville rallied around his family with a barrage of fundraisers that, by his estimate, netted about $35,000.

Tim Edwards figures he’s spent about $10,000 of that fund in the past year. He’s certain the balance will be devoured by future medical bills, a lifetime of medications and a second surgery he’ll need this summer to repair a defective bile duct.

His father was touched by the outpouring of support for his son. But that emotion wouldn’t develop into an idea until about a month after the transplant, when Tim Edwards’ body mildly rejected the new liver. It’s normal for a transplant patient’s body to offer some resistance against the foreign object that has been placed inside it. He recovered from the episode quickly enough, but back in Missouri, Jim Edwards heard “rejection” and panicked.

Driving to Moberly last July 4, Jim Edwards prayed for his son’s life, after which he was overcome by a peace beyond description.

“It just felt like a weight had been lifted from my shoulders,” he said. “Some people think you’re nuts or a holy roller or something, but anybody that has experienced that they know exactly what you’re talking about. It’s one of the more peaceful feelings you’ll ever have.”

At that moment, the faith, fear, family, fireworks, small-town connections and business acumen — all of the separate parts of Jim Edwards’ life — collided into a single idea. The next step was picking the smartest people he knew to help him form and run his nonprofit. None of the people he chose are experts in nonprofits, but each brings a unique strength.

Jim Edwards is proud of the board he’s assembled, which he said represents an ideal blend of expertise, experience and Christian goodwill.

With such an array of talent and commitment around him, Jim Edwards downplays his own role in Lights for Life.

“Why God chose me to stand in front of all these smart people I’ll never know,” he says.

But good intentions are no guarantee of success. A new charity must compete against larger, established charities for exposure and donations just like a new business in a marketplace must face off against larger, established corporations, says Mike Schrader, a professor in MU’s College of Business.

“A new nonprofit entering the market is not much different from a new business entering the market,” Schrader says.

The revenue of a business goes toward its employees, Schrader says, but the revenue of a nonprofit goes toward whatever people and interests it is established to serve.

Moreover, Americans don’t increase the portion of their income they give away with each new nonprofit. Most philanthropists, even the most humble ones, determine how much money they will contribute to charity each year and rarely exceed it. And high-profile disasters like the Indian Ocean tsunami or Hurricane Katrina have a gravity that pulls donations away from other nonprofits, Schrader says.

This makes Jim Edwards and the members of the board reluctant to discuss monetary goals for Lights for Life, which will kick off officially this summer. The plan is not to rely on donations, but to sell fireworks at competitive rates, rather than relying on donations. The original plan was to sell fireworks from five or six locations in Boonville, Columbia, Fayette, Sedalia, Marshall and Moberly. Five percent of the proceeds will go to a group called Ministerial Alliance, which will find the locations for the fireworks stands. The stands will be operated by youth groups, which will receive 10 percent of the proceeds. The rest will be split between the nonprofits and a fund that will be available to Missouri families facing an organ transplant.

But for now, all anyone knows is that some fireworks will be sold and some money will be raised.

“I would rather that they go ahead and spend money on the fireworks than donations,” Jim Edwards says. “Then, everybody would have more fun.”

At his age, he figured he would be gliding toward retirement, not embarking on a new vocation. Fireworks is kind of a young man’s game, he says. He expected security as he crept up on 60 years, but was compelled toward the uncertain to follow through on his idea. He’s already invested much more of his own money than he expected, and that makes him a bit nervous. So far, Lights for Life has only planned for and landed two locations in Columbia and one in Boonville.

“At my age, it’s kind of scary,” he says, “because you’re successful where you are, and it makes you wonder, ‘Why go this direction?’”

But Jim Edwards’ faith is a barrier to any major worries about Lights for Life. Shrugging off his worry for the moment, he says, “God never puts any more on you than you can handle.”

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