In a Major League Baseball career that spanned two decades, former Boston Red Sox right fielder Dwight Evans was hit by pitches 53 times.

None caused him nearly as much pain as the sight of his oldest son, at age 5, holding a washcloth to his eyes to soothe the sting of Tabasco that had been squirted in his face by children who knew nothing of Timmy’s neurofibromatosis.

All they knew was that he looked different from them.

Evans gave some background about neurofibromatosis, a term for three disfiguring genetic disorders that cause tumors to grow on the nerve tissue. By the time Timmy was 5, he had had four major surgeries. The number has since climbed to 40.

“So he didn’t look 100 percent,” Evans said. “And, Tim will never look 100 percent, from the outside.”

Changing the attitudes of children and adults who come into contact with people who live with disabilities, both visible and invisible, is the mission of the Portland-based Cromwell Center for Disabilities Awareness.

Evans will be the keynote speaker at a dinner, dance and auction Thursday night at the Portland Marriott at Sable Oaks in South Portland to benefit the center, which was founded eight years ago by Portland attorney Jamie Kaplan and Les Otten.

Otten, a 2010 gubernatorial candidate from Greenwood, holds a minority ownership stake in the Red Sox. Evans spent 19 of his 20 major league seasons wearing a Boston uniform and continues to work for the club in player development.

He and his wife, Susan, have long been active in raising funds and awareness of neurofibromatosis.

“People sometimes need education about how to be open and inclusive,” said Cromwell Center Executive Director Juliana L’Heureux. “We do it through education and training.”

L’Heureux – who writes a weekly column on Franco-American culture for MaineToday Media – said the center’s current focus is on bullying prevention. Since 2008, educators trained in the Cromwell Method have conducted interactive workshops for students in grades 3 through 5 at 175 schools in Maine.

The group relies on grant money and fundraising to pay for the workshops.

Tim Evans is now 38 and living on his own in Massachusetts, as is his younger brother, Justin, 34, who also has neurofibromatosis. Their sister does not have the disease. She is married and has four children.

While he was playing, Evans rarely spoke of neurofibromatosis and its effect on his family. Not even to teammates. A private person, he said he didn’t want to use it as an excuse.

“That story about Tim? There’s probably about 10,000 of those,” Evans said. “He deals with this every day. But there’s some good stories, too. (The sons) are doing well. They both work. They’re functioning human beings.”

If telling his stories helps other people in similar situations, Evans is willing to let down his guard, to share some of his pain, to connect with parents of children who experience bullying or ignorant cruelty.

“It’s a good cause,” he said. “You don’t want to see anyone hurt your kid, especially the mental part. The mental part, I think, goes deeper than the physical part. So that’s what draws me to this.”

 

Staff Writer Glenn Jordan can be contacted at 791-6425 or at: gjordan@pressherald.com

 

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