BILL FARRELL
Observer-Dispatch

Chris Donalty of Utica had his whole world ahead of him when he died suddenly in February 2002 at age 21.

A senior at Stetson University in Florida, he was preparing to enter graduate school in business. He was found dead in his bed, a textbook beside him and an application he was filling out for a summer job with the Bureau of Alcohol, Tobacco and Firearms next to his books.

Chris died from SUDEP - Sudden Unexplained Death due to Epilepsy.

Jeanne Donalty said her son approached life with a joy and passion, as many who knew the former Proctor Senior High standout baseball player will attest.

As a mother, she also wants people to know it is "unacceptable to die from a seizure."

Today, she'll bring that message to Congress in hopes that others will understand the critical need of finding a cure for epilepsy.

Donalty will testify before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies on behalf of Citizens United for Research in Epilepsy.

It's a volunteer, grass roots, nonprofit organization founded in 1998 by mothers of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications.

"Chris would want people to know that he had no idea

that this disease could claim his life at such an early age," his mother said. Donalty is Utica district office manager for Rep. Sherwood Boehlert, R-New Hartford. Her husband is Acting State Supreme Court Judge Barry Donalty.

Chris had his first seizure in fourth grade, she said, but medical tests showed nothing and the family was assured there was no cause for alarm. Four years later, he had another seizure, then a third four years after that.

The doctor told the Donaltys that Chris had epilepsy, that he would have to start taking medication and give up his driver's license. But he also said Chris could lead a normal life with few restrictions.

Chris began taking anticonvulsant medication and graduated from high school seizure free. Donalty remembers with pleasure when she and her husband packed up their son and drove him to Stetson.

"He started playing ball, joined a fraternity and began those wonderful carefree days as a college freshman," she recalled.

But there were more seizures. Another medication was added, but in Chris' sophomore year the medications made him sick and he became depressed, especially since he continually had to fight debilitating side effects, his mother said. When he came home, there was another medication change.

"From that point on we believed Chris was seizure free. But we learned after his death that the seizures had never stopped. Chris did not tell his doctor or us."

The Donaltys don't know why. They can only imagine he was determined not to let his illness control him. "He wanted to drive a car, to live independently, and somehow, I know he believed he could figure this all out," Jeanne Donalty said.

She'll tell the subcommittee that Chris Donalty's story is just one of "many equally heartbreaking stories of disappointment, fear, loss, lives cut short and families with shattered dreams."

And she'll emphasize that despite public perception, epilepsy is not a manageable disorder. There are still too many unanswered questions, too many unsatisfactory treatments and still no cure, she said.

As a member of CURE, Donalty has actively worked to raise the level of epilepsy awareness in New York and around the nation. Since its inception, CURE has raised more than $1 million to fund initiatives that will lead the way to a cure.

It was Boehlert who arranged for Donalty's appearance before the subcommittee today. She'll be one of 18 people giving testimony on various topics.

Boehlert said he was hopeful that through collective Congressional efforts "we can work together at all levels to support more research and ultimately find a cure."

Donalty said she knows that if Chris were at her side today giving testimony he would say, "We can waste no more time."

A fund-raising benefit for CURE -- called the Christopher Donalty CURE benefit - will be at 6 p.m. Thursday, Sept. 4, at Alfredo's Banquet-Restaurant, Seneca Turnpike, New Hartford. Benefit chairman will be local attorney George Aney. Money raised will go to CURE for research.