Share this article

print logo

Doomed to die early, his words live on Man made most of time he had

Unlike most people, Jason C. Stafford understood at an early age his life would likely not be long.

Born with an untreatable, progressive neurological disease, he realized his time would be shorter than most of his contemporaries. Some might have withdrawn and lived in self-pity. Instead, he vowed to make the most out of the time he would have.

"I always tried to live each day to the fullest," Stafford was quoted in the notice announcing his death, which occurred Wednesday night in his Amherst home. "I wish it was more, but God seems to want me."

Stafford, known to his many friends as Jay, turned 26 June 12.

His parents learned shortly after he was born that he had neurofibromatosis, although his mother, Karen, said doctors initially misdiagnosed the condition.

"They told us he had Elephant Man's disease," she said. "The doctor was very rude. He said he would grow up to look like the Elephant Man."

Neurofibromatosis is a genetic disorder in which many soft, fleshy growths of nerve tissues grow under the skin and in parts of the body. No known treatment can stop its progression or cure it.

Because of the condition, her son was developmentally delayed, Stafford said. But he was always an active child, "very impulsive."

When he was old enough to understand his condition, Stafford said, her son "was very angry for a while.

"But I taught him the hardest thing you're gong to have to do in life is know yourself," she added. "If you get to know yourself -- your limitations and your strengths -- and work on your strengths, you will be stronger than most people out there."

Jason Stafford's strengths, according to family members, friends and co-workers, were determination, a willingness to work hard and an engaging personality that seemed to bring out the best in those around him.

"He had a drive and a lot of courage and a lot of strength," said his aunt, Sandy Barillari. "He had the determination to get what he wanted in life. His goal was to enjoy life along the way, and he did."

His medical condition made Jason's bones brittle -- he spent the summer in a body cast as a 14-year-old. And the deterioration and eventual dissolution of his parents' marriage had a negative impact on her son's mental well-being, Karen Stafford said.

Still, with the help of counseling, Jason was able to recover and eventually earn his general education diploma, then start attending classes at Erie Community College.

He made enough of an impression in the Amherst Central School District that he was hired as a custodian at Amherst Middle School.

"He was not easily discouraged," said his friend and fellow custodian, Pat Crowley, who added that many of his co-workers were unaware of Stafford's background until recently.

"When you sit there and you face struggles in an everyday life, you sometimes let them get you down," he said. "To see someone like Jay, who basically had barriers thrown in front of him his whole life and went over, under and around them all . . . was just incredible."

Jason was interested in a career in hospitality and took a second job in 2005 with what was then the Hampton Inn near the UB North Campus.

He worked as a bellman and driver, according to the hotel's general manager, Rick Maurer.

"Being a bellman, that's the first person you see when you come in from the airport," he said. "It's a huge impact when they're hit with a personality like Jason's. It starts their stay off on the right foot."

Universally liked by his co-workers, he was named associate of the quarter for the first part of last year. When the award went monthly this year, he won it in January. Maurer said he will be awarded it posthumously for April.

"We hope to establish some kind of memorial garden outside the hotel once the renovations are complete," he said.

Jason dictated his lengthy death notice, which appeared in Thursday's editions of The Buffalo News, to his mother as his disease progressed rapidly in the past month.

"To all the people I met in life," it started. "I don't want people to cry 'cause I am dying, but I want people to know how much living meant to me."

A memorial service will be at 1 p.m. Sunday in Amigone Funeral Home, 8440 Main St., Clarence.


There are no comments - be the first to comment