As life ebbs, ex-pilot wins war link to his illness

[Guest guest]

(This is the story of a hero - a hero who has been abused by our government.

The Gulf War vets deserve to know the truth about what they were exposed to.

They deserve to be treated to the best medical treatment available on this

planet. Until we all get behind them and make so much noise Washington

can't deny or hide the truth any longer, their health problems - like the

ones we victims of mycotoxin poisoning suffer, will continue to be denied. )

http://www.sptimes.com/2002/02/17/Worldandnation/As_life_ebbs__ex_pilo.shtml

As life ebbs, ex-pilot wins war link to his illness

©Associated Press

February 17, 2002

SOUTH WINDSOR, Conn. -- He has something to say, so he begins by slowly,

deliberately blinking his eyes to spell each word, letter by letter.

Donnelly sits in his den, jokingly dubbed the " I love me room, "

filled with mementos of his days as an Air Force fighter pilot. His helmet

and leather jacket. Pins from bombs he dropped. A thumbs-up photo in his

F-16.

And rows of medals, of course, several for 44 combat missions he flew in the

Persian Gulf when he swooped down to strike enemy targets.

That was his world 11 years ago.

Today his world is his house, a wheelchair, a feeding tube, a ventilator.

At 43, Donnelly has amyotrophic lateral sclerosis, known as Lou

Gehrig's disease, a mysterious, relentless illness that has robbed him of

his ability to walk, talk, swallow, even breathe on his own.

So he " speaks " with his eyes: He strings together words by blinking when the

appropriate letter is spoken.

ALS has turned Donnelly's body into a prison, but it has not destroyed his

spirit or his determination. He and his family waged a five-year battle to

convince America's military that his illness is traceable to his service in

the Persian Gulf War.

And finally, some success.

The Department of Veterans Affairs recently announced Gulf War veterans were

nearly twice as likely as other military personnel to develop Lou Gehrig's

disease -- marking the first time it linked service in the region to a

specific illness. A tiny group of ALS veterans received their first benefits

this month.

Donnelly's father, Tom, a former Marine who is now a lawyer, calls his son a

hero.

Donnelly brushes aside such talk.

" I am, " he says, spelling with his eyelids, " just a regular guy in an

impossible situation. "

The day the flying stopped

With his athletic good looks and cool confidence, Donnelly could

have stepped out of a recruiting poster.

At 6 feet 2 with sandy blond hair, blue eyes and a 1,000-watt Tom Cruise

smile, he was a real-life Top Gun pilot. Type A personality. Nerves of

steel. An air of invincibility.

After the war, everything changed.

While a flight instructor at Sheppard Air Force Base in Texas, Donnelly

became ill. In early 1996, he fell backward climbing a ladder to a jet.

He never flew again.

At first, a doctor thought it was stress. Later that year, Donnelly was

diagnosed with ALS, or amyotrophic lateral sclerosis, a neurological disease

that progressively destroys motor neurons.

Lou Gehrig's disease, named for the New York Yankees Hall of Famer, kills

most people within two to five years. The cause is unknown. There is no

cure.

And it is rare: About 5,000 people are diagnosed each year, most in their

60s and 70s. Donnelly was diagnosed at 37, the age at which Gehrig died.

ALS is a slow-motion death. It paralyzes your muscles until you're locked

into your body, unable to communicate. But your mind remains alert.

And Donnelly's is.

His gaze is intense, his wit sharp, his comments perceptive and honest, even

painfully so.

He jokes about his beloved Boston Red Sox, follows the war news and does his

banking and shopping via computer (a specially designed mouse command is

attached to his headrest).

But so many things he enjoyed -- riding his dirt bike, boating with his two

kids, now 14 and 10 -- are just memories in a photo album.

Donnelly and his family became convinced his illness was somehow connected

to missions in which he dropped bombs on chemical plants and munitions

depots in Iraq, then flew back through toxic plumes rising from the targets.

As Donnelly's disease worsened, he and his family pressed on.

His mother, Rae, phoned doctors and research foundations. His father and

sister, , wrote and called hundreds of people in Washington.

In 1997, Donnelly testified on Capitol Hill, saying the military was trying

to trivialize Gulf War illnesses.

" Remember, " he said, his words slurred as his throat muscles were wasting

away, " I am not the enemy. "

In 1998, Donnelly, with his sister's help, published his story. H. Ross

Perot, who has bankrolled research on Gulf War illness, helped get them on

the Larry King show.

Overcoming the studies

Science was stacked against Donnelly.

Three government studies had not found any link between Gulf War service and

neurological illnesses. But his family persisted.

After meeting the Donnellys and veterans groups, Dr. Feussner, the VA's

chief research officer, asked for a review of earlier data and it found ALS

cases were younger than expected.

A new, exhaustive study was ordered and preliminary results announced in

December found ALS was nearly twice as common for Gulf War veterans as a

group, compared with military members not deployed in the region.

The numbers are tiny: 40 among 700,000 people in the Gulf War, compared with

67 in the nondeployed group of 1.8-million.

Feussner calls the rate " statistically significant " and also notes that VA

Secretary J. Principi didn't want to wait up to a year for the study

to appear in a scientific journal, knowing the disease already had killed

half the ALS vets.

The VA decision provides disability and survivor benefits to ALS veterans

and their families.

Since he became ill while on active duty, Donnelly already was receiving

disability benefits.

Feussner also says it's important to have scientists replicate your work.

" There's no question that would give it more credibility, " he says. " But

that will take years. "