Boston Globe Sunday, 12/16/01 A Final Gulf War Victory

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THIS STORY HAS BEEN FORMATTED FOR EASY PRINTING

A final Gulf War victory Family persisted on link to ALSBy Arnold, Globe Staff, 12/16/2001 SOUTH WINDSOR, Conn. - His soul and spirit remain intact. But because Donnelly is in the advanced stages of Lou Gehrig's disease, the former Air Force fighter pilot and Gulf War combat veteran can only move his eyes. To communicate, he and his attendants have worked out a system: Someone recites the alphabet, and Donnelly blinks at the appropriate letter to slowly telegraph a message. So it took a while, but late last week Donnelly had something to say about the guy who took up his fight when his body started to fail. ''I knew my Dad was honest, but I did not know how much integrity he had until my sickness,'' Donnelly said. ''He is a bulldog. He doesn't quit.'' Last Tuesday, after maintaining for years that Gulf War Syndrome was nothing more than stress, the government acknowledged that Desert Storm veterans were twice as likely as non-veterans to suffer from Gehrig's, the fatal neurological disease. Thanks to Donnelly's persistence and the efforts of his father, , a lawyer and former Marine, the military will pay full benefits for 40 Gulf veterans known to have Lou Gehrig's disease, and has moved a step closer to taking care of all the soldiers made sick by fighting in the war. After years of investigation, Donnelly and his family concluded that Iraqi nerve gas was in the atmosphere during the Gulf War, affecting perhaps as many as 100,000 soldiers now complaining of a variety of maladies. Donnelly, 41, is a testament to some seemingly opposing realities. He is proof that the more you need people, the more you can help them, and that the more you lose in life, the more you can appreciate the faculties you still have. At Donnelly's home the other day, a respirator cyclically wheezed life into a man who cannot talk and whose body has failed him in more than a few undignified ways. Though trapped by incapacitation, Donnelly exuded an aura of someone in charge. His eyes - quick, big, and round, enhancing his boyish good looks - seemed to miss very little from his massive life-support wheelchair. He is still very much Major Donnelly: ''Big D'' to his Air Force buddies, the F-16 Falcon tactical jet pilot who flew 44 missions over Iraq in 1990 and 1991. His ultimate challenge, however, began four years later. On an August day in 1995, Donnelly was jogging at Sheppard Air Force Base in Wichita Falls, Texas, when he accidentally ran through a fog of malathion, an insecticide being sprayed for mosquito control. Shortly afterward, he started suffering from bouts of insomnia, heart palpitations, and drenching night sweats. By the spring of the following year, doctors had diagnosed the strapping young fighter pilot and father with amyotrophic lateral sclerosis or Lou Gehrig's disease, which slowly destroys the body's nervous system, leading to complete paralysis and, ultimately, death. Mitch Albom, author of the 1997 book ''Tuesdays With Morrie,'' wrote a pointed description of the disease that killed his Brandeis professor and mentor: ''ALS is like a lit candle: It melts your nerves and leaves your body a pile of wax.'' The rare disease typically affects older people, but Donnelly was just 35 when he was diagnosed. Soon afterward, members of his family began doing research. Their subsequent conclusion: The low dose of malathion, combined with exposure to nerve agents he may have flown through on combat flights, put him at high risk for the disease. ''Mike called me in January of 1997 after reading some work I had been doing on brain injury from chemicals,'' recalled Haley, an epidemiologist at the University of Texas. As his condition slowly worsened, Donnelly, his father, and sister began collecting anecdotal evidence of other Gulf veterans with ALS. ''Those three were not only the crucial players in all of this - they were often the only players in the beginning,'' Haley said. Donnelly, who was a Marine Corps helicopter pilot, launched a campaign to persuade the military to acknowledge that the chronic illnesses of some Gulf War veterans were caused by combat conditions. Donnelly and his sister, meanwhile, collaborated to write ''Falcon's Cry,'' a diary of Donnelly's Gulf War missions, his encounters with suspicious chemical targets, and his subsequent search for clues about how he and other veterans contracted ALS. Donnelly recalled a typical response by the military during a 1998 party in Washington when her brother was on a book tour. At the time, Donnelly still could communicate using a cumbersome device allowing him to tap out messages on a computer keyboard using head movements. During the party, a Pentagon public relations official approached Donnelly's wheelchair and urged the highly decorated combat pilot to tell him how to help. Slowly, letter by letter, his sister recalled, Donnelly's response painstakingly crawled across the computer screen: ''Save my [backside], don't kiss it.'' Tuesday's acknowledgement by the military, in a joint news release by the Department of Defense and the Department of Veterans Affairs, noted in part that the 40 known Gulf War soldiers with ALS immediately qualify for full disability and survivor benefits. Donnelly attributes the policy shift to irrefutable evidence and the compassion of J. Principi, the new Veterans Affairs secretary. ''A straight up-and-down guy,'' Donnelly likes to say. Though he has lost little of his efficient, leather-necked bearing as an ex-Marine, the elder Donnelly is openly tender around his son. He cupped and massaged 's powerless hands, and fought emotion as he reflected on their arduous journey. ''You know, Mike, I continue to be astounded by your courage,'' he said. ''I could never do what you have done.'' This story ran on page B1 of the Boston Globe on 12/16/2001.

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