Reaching for a Cure

When a midnight call comes to the World Life Foundation from parents desperate to save a sick child’s life, Lou Baum knows what they’re going through.

The Euless, Texas, man and his wife, Vicki, faced the same fear when their daughter was 4 days old. Catherine lapsed into a coma—the result of a disease shared by only about 35 people in the world. Fast action saved her life, and now the parents of the 16-year-old share hope with other parents of sick children, mostly those with rare diseases whose parents cannot afford transportation to specialists who might help.

“I can’t even pronounce some of the rare diseases that some of the kids have,” Baum says. When local doctors call for specialists, Baum’s World Life Foundation can help.

Since 1991, the foundation has helped thousands of families reach doctors and helped more than 650 families to fly their children to distant hospitals. “Most of the time they know what the child has and have the name of a doctor,’’ Vicki Baum says.

The foundation’s chief role is arranging transportation. They rely on pilots who volunteer their own time to fly children on private planes lent for the flights or free flights donated by commercial airlines.

Most of the families are poor, often headed by single mothers without insurance or money to travel. “That’s very sad,” Vicki Baum says, “because to have the hope of a treatment or cure and not be able to reach that facility is very, very frustrating.”

Lou or Vicki Baum answer the toll-free number (1-800-289-LIFE) any hour, or any day—averaging three to four calls a day. They are the sole unpaid staff.

“We have never turned anybody down when they needed help,” says Baum, 63.

In 2001, Baum was awarded the National Child Labor Committee’s Lewis Hine Award, given each year to five people working to improve children’s lives. “When you hear the name Lou Baum in Euless, you think leadership and innovation,” says Mary Lib Saleh, mayor of the city of 46,005.

First-hand experience was the spur. Tests for Catherine could only be performed in Denver, 800 miles away. Baum, an American Airlines frequent flyer, tried calling Robert Crandall, then American’s CEO, to ask for help. Amazingly, Crandall called back 10 minutes later to say everything was arranged. A vial of Catherine’s fluids was on the next flight to Denver. She was diagnosed 18 hours later with argininosuccinic aciduria, a disease in which the body can’t break down ammonia, common in high-protein foods such as breast milk. The built-up ammonia can cause brain damage and sent Catherine into a coma.

When she was 3, the U.S. government halted imports of a special formula from Germany that she needs to survive. Baum called the White House and asked to have his request put through to President Reagan, who signed a special decree and got Catherine’s medicine on the way. When Baum called back to thank Reagan, he was put through to speak to Reagan, who later named Baum to the National Commission on Orphan Diseases. The Orphan Drug Act, which provides incentives for development and manufacture of drugs to treat rare diseases, defines orphan diseases as conditions affecting fewer than 200,000 people in the United States.

Catherine proved the doctors wrong by walking, talking, and surviving. She rides horses and swims for therapy, reads, and listens to music voraciously. But she suffered brain damage from the coma, and the Baums don’t know how long she’ll live.

Three years ago, Vicki developed multiple sclerosis. “We take every day as it comes, you know?” says Baum. “And most of them are good days.”

But the families he touches are the biggest reward, Baum says.

“It’s quite rewarding when you hear a mother call and say, ‘He’s gonna live,’ or ‘She’s gonna live.’”

David Frey is a regular contributor to American Profile.

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