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Although Riegle is gone, there are a few others in Washington fighting for afflicted Gulf War families. One is Rockefeller, but in recent months he has lost clout. After last year's GOP landslide, he was ousted as chairman of the Veterans' Affairs Committee, which produced the 1994 report on PB and vaccine use in the Gulf. The new chair, Alan Simpson (R--Wyo.), plans no action "until the hard science is in," says an aide.
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Learning to walk on prosthetic legs (right) is terribly difficult without arms to use for balance. Jayce's mother, Connie, holds up a mirror to help him with coordination. |
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Then there is Hillary Rodham Clinton, the point person for an administration that, by pushing through a 1994 law mandating benefits for vets with symptoms, has cast itself as a friend of Gulf War syndrome sufferers. On August 14, at the opening session of the presidential advisory committee on the syndrome, she declared, "Just as we relied on our troops when they were sent to war, we must assure them that they can rely on us now."
Whatever White House fact finders discover, there's no guarantee that Gulf War babies will get government help. As it stands, a soldier's children receive free medical care only as long as a parent remains in the service. For parents who return to civilian life, the going can be grim. Moreover, the government's record on earlier military health grievances is hardly reassuring. Soldiers unwittingly used in radiation experiments in the 1950s, for instance, had to fight the VA for compensation until the 1980s. And Vietnam veterans claim that scientists manipulated evidence to hide the ravages of Agent Orange. "The CDC actually skewed the data," says retired Navy Adm. Elmo Zumwalt Jr., who blames his son's fatal cancer on the defoliant. Vietnam vets won a $180 million settlement from Agent Orange manufacturers, but not until 1984. Gulf vets, says Zumwalt, "need to keep the pressure on, because in the case of Agent Orange--and I'm sure it'll occur with Desert Storm syndrome--the companies who stand to be found liable for any harmful effects will be in there lobbying." |
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"A lot of parents have anxieties about coming forth"
-DR. SHARON COOPER, Womack Army Medical Center |
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A few Desert Storm families have been relatively lucky--the Clarks, for instance, whose daughter has been granted free treatment through November of 1996, thanks to an Air Force doctor who recommended her as a subject for study. But others have been denied insurance coverage for "preexisting conditions." They are being driven into poverty; some join the welfare line so Medicaid will help with the impossible burden. "You could be a millionaire, and there's no way you could take care of one of these children," says Lisa Arnold.
Betty Mekdeci thinks Congress should set up a special insurance fund for families like the Arnolds. "The very least we owe these folks is to provide them with a guarantee of care," she says. "I'd be glad to pay the extra taxes to do it.""
"I'm angry, frustrated and sad," says Darrell Clark. "It's unfortunate that no one will speak up and say, 'Maybe we made a mistake. How can we help you get on with your lives?'"
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An airplane swing sets Jayce free. |
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Packed into an airplane-shaped swing at his grandmother's house in Charlottesville, Va., Jayce Hanson is getting on with his life as best he can. A cherubic, rambunctious blond, he's the unofficial poster boy of the Gulf War babies--seen by millions in People. Jayce is the center of attention here, too, as his father pushes the swing and a photographer snaps his picture. But since his last major public appearance, he has undergone a change: His lower legs are missing.
Now three years old, Jayce was born with hands and feet attached to twisted stumps. He also had a hole in his heart, a hemophilia-like blood condition and underdeveloped ear canals. Doctors recently amputated his legs at the knees to make it easier to fit him with prosthetics. "He'll say once in a while, 'My feet are gone,'" says his mother, Connie, "but he's been a real trouper."
During the war, Paul Hanson breathed heavy oil smoke; he stopped taking PB pills early, because they made him dizzy. Now he suffers regularly from headaches, nausea, tightness in the chest. Still, he is optimistic for his son.
"Jayce is very bright," says Paul. "He doesn't realize his limitations. But when he grows up and says, 'Why am I not like everybody else?' we'd like to be able to explain it to him." |
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