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Wendy Marx, 36; Head of Foundation Devoted to Organ Donor Awareness

October 30, 2003|Dennis McLellan | Times Staff Writer

Wendy Marx, who spent more than a decade increasing public awareness of the need for organ donors after receiving her own life-saving liver transplant, has died. She was 36 and awaiting her third transplant.

Marx, co-founder and president of the Washington, D.C.-based Wendy Marx Foundation for Organ Donor Awareness, died Tuesday at Stanford University Medical Center.

Over the last decade, she had traveled across the country, publicizing the need for organ donations and working with local hospitals, organ banks and community groups.

"She was indefatigable," said Pamela Silvestri, public affairs director for the Dallas-based Southwest Transplant Alliance. "Every time somebody met her, she just got them jazzed about organ donation, and that's going to be a huge hole in our community."

Marx received her first transplant in 1989 at age 22 after a severe case of hepatitis B destroyed her liver. She had a second transplant in 1992 after the virus struck again, and although she remained in good health with the aid of medication until about a year and a half ago, she never knew when the virus might return.

Despite her previous good fortune, Marx knew the odds of getting a third new liver would be low when she was placed on the waiting list several months ago: There are more than 17,000 people in the nation waiting for liver transplants, according to the United Network for Organ Sharing.

"As much a gift as Wendy's whole life has been to us, the last 14 years have been even more so," her brother Jeffrey Marx said Wednesday.

But the biggest gift she gave the world, he said, "was her kindness and her desire to reach out and touch the lives of others. And that's exactly what she's done with this foundation."

An author and Pulitzer Prize-winning reporter, he co-founded the foundation in 1990 with his sister and Olympic track and field champion Carl Lewis.

Lewis, a family friend, had stood vigil at Wendy's bedside with her family in 1989 and made a public appeal for her first donated liver.

While taking a break from the intensive care unit during the crucial 24 hours when they were waiting for her transplant, Jeffrey Marx and Lewis made a commitment to themselves that they would work the rest of their lives to spread the word about the need for organ donors -- whether or not Wendy survived.

"Of course, the ultimate dream was for her to survive and be the focal point," her brother said. "But there were no guarantees for that."

Marx chronicled his sister's struggle in a 2000 book, "It Gets Dark Sometimes: My Sister's Fight to Live and Save Lives," which has been distributed free to high school and junior high school libraries around the country.

The youngest of three children, Wendy Marx was born and reared in Rye Brook, N.Y., a New York City suburb. An English major at Duke University, she graduated in 1989 and realized a longtime dream by moving to San Francisco, where she was hired as an account manager for a marketing and advertising firm.

Not long after the move, she began experiencing constant fatigue and loss of appetite. When her skin and eyes grew yellow, she went to the doctor.

She was diagnosed with hepatitis B, which is caused by a highly infectious virus that attacks the liver. Doctors later theorized that she had contracted the virus while having her wisdom teeth removed.

Within a matter of weeks, she was in the hospital. The accumulation of toxins that are normally cleaned by a healthy liver caused her brain to swell, and she slipped into a deep coma. The severity of her condition placed her at the top of the national transplant waiting list.

After she had been in the coma several days, doctors told her family that, without a new liver, she had no more than a day to live. She was saved by a liver from a 9-year-old New Jersey boy who had died in a car accident.

Marx never knew the name of the boy -- or of the 17-year-old youth from New Mexico who supplied her second transplanted liver -- but they were never forgotten.

"I think about them all the time, " she told the San Francisco Chronicle in 1999. "I think about the families. I think about whether they're still grieving or if they've healed. I hope they're leading full lives and that time has healed their sorrow."

Since it was founded 13 years ago, the Marx Foundation has helped start a fellowship program to educate young doctors about organ transplants.

In 1990, the Marx group and the National Kidney Foundation launched the U.S. Transplant Games. Wendy Marx and Lewis were co-chairmen of the first games. The Marx Foundation also founded the U.S. Sports Council on Organ Donation, a panel of athletes, coaches and journalists dedicated to boosting the number of available donors.

In addition, the foundation has worked on transplant and donor awareness programs in more than 25 states, as well as national and regional programs, and Wendy testified at federal hearings on organ donation and allocation policies.

She was vice president of consumer media for the Foundation for Accountability, a health-care advocacy group, but organ donor awareness was her priority.

"That cause was such a driving force in her life, because she knew how many other families were in the same situation that we were in. And she always wanted to reach out and help those other families," her brother said.

He added: "Her work in no way ends now. In fact, we will be redoubling our efforts to reach people about the importance of being an organ and tissue donor."

In addition to Jeffrey, who lives in Washington, D.C., she is survived by her husband of three years, E. David Ellington of San Francisco; another brother, Jim, of White Plains, N.Y.; and her parents, Peggy Marx of Lake Worth, Fla., and Richard Marx of Bedford, N.Y.

Memorial services will be held Friday at 3 p.m. at Congregation Sherith Israel, 2266 California St., San Francisco; and at 2 p.m. Wednesday in White Plains.

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