During the Gulf War, Air Force Maj. Michael Donnelly was a master of the skies, flying his F-16 fighter jet over Iraq at 1,000 mph and dodging enemy fire as he bombed chemical munitions plants and depots. Eleven years later, in the study of his South Windsor, Conn., home, the once-strapping six-footer can’t even propel his wheelchair across the room.
At 43 Donnelly is one of 56 Gulf War veterans diagnosed with amyotrophic lateral sclerosis (ALS), the fatal neurological disorder known as Lou Gehrig’s disease, for the Yankee slugger whose life it claimed in 1941. Half of the affected vets have already died from the illness, which destroys nerve cells in the brain and spinal cord. Many of the rest, like Donnelly, cannot dress or feed themselves, speak clearly or breathe without the aid of a respirator.
But thanks largely to Donnelly and his family, who spent nearly six years lobbying the government to acknowledge a link between Gulf War chemical exposure and ALS, those veterans have won a ringing victory: In recent weeks, citing a study showing that soldiers who served in the Persian Gulf during the war were twice as likely to develop ALS as those who did not, the Department of Veterans Affairs has begun issuing monthly checks of up to $2,163 to afflicted vets, marking a policy shift that many thought was long overdue.
For Donnelly it is no easy task—literally—to describe how he felt when the government announced the compensation plan last December. After his wife, Susan, 42, a dental hygienist, clears his tracheal tube to ease his breathing, his sister Denise, 45, slowly calls out the alphabet. The former pilot raises his eyes slightly to select letters one by one. “Stunned and surprised,” he signals. “I never thought I’d see it.”
In fact, without the Donnellys, says Dr. Robert Haley, 57, chief epidemiologist at the University of Texas’s Southwestern Medical Center in Dallas, who has been studying Gulf War-related health problems since 1994, “it’s fair to say this issue probably would not have come to our attention.” In addition to petitioning politicians, holding press conferences and testifying on Capitol Hill, the family—including not only Mike, Susan and Denise but Mike’s mother, Rae, 66, and father, Tom, 68, an ex-Marine and former Connecticut state legislator—helped track down other ALS vets to make the study possible.
While the preliminary report, authored by the U.S. Departments of Defense and Veterans Affairs and covering the nearly 700,000 military personnel deployed in the Gulf War, does not answer all questions about how the disease develops, it does validate what many victims have long believed. “Imagine that for 10 years you had a disease that you didn’t know the cause of and couldn’t get compensation for because they told you it wasn’t from the Gulf,” says Stephen Robinson, 39, executive director of the National Gulf War Resource Center. “Now science is finally telling veterans: ‘It’s true.’ ”
The cause of ALS itself is still a matter of speculation. In 5 to 10 percent of cases the disease is clearly inherited. In some other cases experts believe a combination of genetic and environmental factors may be responsible. That theory, scientists say, could explain why many vets who have developed ALS did so in their 20s and 30s—decades earlier than the disease’s usual time of onset. “Normally it takes a lifetime of environmental exposure to damage the neurons that trigger ALS,” says Haley. “If these vets were already susceptible because of their genetic makeup, chances are they would have gotten it later in life anyway. But because they were exposed to huge amounts of environmental toxins, they got it at an earlier age.”
No one knows, however, which, if any, toxins may be at fault. Gulf War vet Joshua Calderon, 45, first noticed his symptoms while hanging Christmas decorations outside his family’s Parkland, Wash., home in 1997. “I was putting up lights and I couldn’t hold on to the nails with my right hand,” he says. “I remember thinking, ‘Gee, it must be colder than I think.’ ” Two years later Calderon, married to Mary Jane, 40, an insurance broker, and the father of two, was diagnosed with ALS. A former Army medic who spent seven months in the Gulf helping set up a battalion hospital, he was exposed to dozens of medications and insecticides. Did one of these substances trigger his disease or was it the interaction of several chemicals? Doctors can’t say. What is certain is that Calderon can no longer work, drive or feed himself. “My condition is a mystery,” he says. “There’s still a lot to learn.”
Compounding the enigma are the cases of such vets as Gerald Houk of Calera, Okla., who was never in the Gulf. In January 2001 the former Air Force mechanic died at 56 of ALS. A year later so did Linda, 52, his wife of 36 years. The disease is not contagious, and the extreme rarity of a husband and wife coming down with it—the odds are roughly one in a billion—leads the Houk’s two daughters to suspect that a toxin triggered both parents’ illnesses. Houk was exposed to Agent Orange in Vietnam. In 1961 he also attended an eight-month training program at San Antonio’s now-defunct Kelly Air Force Base, where the military has begun to investigate what appears to be a high incidence of ALS among former residents and employees. “My father knew his ALS had to be from serving in the military,” says his daughter Gina, 32.
Even if that were so, his wife’s disease may simply have been a tragic coincidence, since Linda never lived at Kelly or served in Vietnam. In the absence of hard evidence, says Haley, “we don’t know what happened.”
For his part Donnelly believes that his ALS had its beginnings in the 44 sorties that he flew over Iraq. U.S. bombs, he wrote in a 1998 book co-authored with his sister Denise, Falcon’s Cry: A Desert Storm Memoir, released “clouds of fallout…through the air” when they struck Iraqi chemical-and biological-weapons storage areas. “And that’s where I was, in the air.”
After the war he, Susan and their children Erin, now 15, and Sean, 10, moved to Sheppard Air Force Base in Wichita Falls, Texas. There, in 1996, after experiencing the classic early symptoms—irregular gait, failing muscle coordination—he was diagnosed with ALS and given a life expectancy of two to five years.
Today, while researchers struggle to determine exactly what caused him and other vets to fall ill, Donnelly is pleased at the government’s attention and what it may mean for U.S. troops now in Afghanistan. “Our forces are wearing a lot of protective gear now,” says V.A. Secretary Anthony Principi, who came to know Donnelly during his Hill lobbying efforts. In addition the Pentagon has stepped up air-and water-quality monitoring for its troops, as well as medical evaluations both before and after battle.
More than that, the suffering of Gulf War vets with ALS may contribute to scientists’ understanding of the disease—and their search for a cure. “We’ve achieved a small measure of success already,” says Donnelly, laboriously spelling out his thoughts. “But it’s like shooting down enemy fighters. Your mission isn’t complete until you bomb the target. And my mission will be successful when I recover.”
Tom Duffy in South Windsor, Mary Boone in Parkland, Chris Coats in Calera and Susan Gray Gose in Washington, D.C.