Dwight Evans' family fights uncertainties of disease

September 01, 1991|By Randi Henderson

From the window of his hospital room, Timothy Evans could see the lights of nearby Fenway Park.

"I'm going to hit you a home run tonight," his dad would tell him as he left the hospital for the ballpark.

Sometimes he did. From 1977 to 1983, while Tim endured a dozen operations to remove tumors from around his eye, his father, Dwight Evans, hit 131 home runs and knocked in 386 runs for the Boston Red Sox.

Tim has neurofibromatosis -- better known as elephant man's disease -- a sometimes disfiguring genetic disorder characterized by soft tumors, usually benign, that grow on the nerves.

He had had 16 operations by the time he was 16. By 1989, he and his family were hopeful that the worst was behind.

But 1989 was the year that Tim's younger brother, Justin -- who had been diagnosed with neurofibromatosis when he was 5 -- underwent 12 grueling hours of surgery to remove a tumor wrapped around the top of his spine.

Justin's operation was in March, just as his father was beginning spring training. Mr. Evans flew to Boston from Florida to spend anxious hours with his wife, Susan, in the hospital waiting room and to be with Justin for the first days of his recovery.

Then it was back to the team, back from the world of IVs and operations to the world of fly balls and RBI.

Neurofibromatosis is estimated to occur in 1 in 3,000 people. Because of its association with John Merrick -- the 19th-century Englishman who became known as the Elephant Man because of his disfigurement -- the disorder conjures up a sense of horror.

There was no horror in the Evans' apartment in Canton when Mr. and Mrs. Evans and their three children, Timothy, 18; Kirsten, 15; and Justin, 14, met with a reporter last week.

"Our life is chaotic, but you try to be a normal family," says Mr. Evans, 39, who played with the Red Sox for 18 years and signed with the Orioles after Boston released him last year.

"There's never been any choice about just hanging in there," says his wife, also 39.

Tim shows the most obvious signs of NF: His left eye is partially closed, the skin around it lumpy and raw-looking.

Teased by other children, he suffered emotional damage as he grew up.

"I saw a kid who turned unhappy because of what people put him through," his mother remembers. "Timmy went from being a real happy kid to a child who didn't smile for many years because he was hurting."

But these days, Tim, tanned and muscular, has devised his own method of dealing with the world. "I don't tell people [I have]

neurofibromatosis, I tell them I got into a fight," he explains. "They say, 'What happened to the other guy?' I say, 'He looks even worse.' "

The invisible tumor

Unlike his brother, Justin had no visible signs of NF at birth and still doesn't.

But at the age of 5, he fell over in a chair, and doctors, looking for an explanation for his balance problem, discovered a tumor at the base of his brain.

Justin's tumor was inoperable but was treated successfully with seven weeks of radiation that left the boy thin and temporarily bald. The radiation left another legacy: It damaged Justin's pituitary gland and stunted his growth. For the past four years he has received daily injections of Pertropin, a growth hormone, and has shot up to about 5 feet, 4 inches.

Then, 2 1/2 years ago, Justin was struck by paralysis on his right side. A second tumor was found on his spine and surgically removed. For months after the operation, Justin had to wear a rigid chest and neck brace for support. When liberated from the brace, Justin and his brother smashed it to bits with a sledgehammer.

Kirsten does not have NF, although her brothers' illness has affected her emotionally. "I'd feel sorry for my brothers, but I always felt kind of jealous," she says. "My parents were always at the hospital, always concerned about how the boys were doing."

Today, Mr. and Mrs. Evans point to their Christian faith as one of the most effective ways they have found to handle what life has dealt them.

Along with their faith, the Evanses say, their relationship has helped them cope. "The No. 1 thing, Dwight and I have always had each other. After 21 years of marriage, that's always been our strength," Mrs. Evans says.

Living in Boston, with both their families on the West Coast, they needed each other's strength. And so did the boys.

"If I had become hysterical with Timmy or Justin at any time, it wouldn't have helped them," Mrs. Evans says. "They handled the surgeries great. Because I wasn't falling apart, they weren't either. With the seriousness of the things they were going through, I think they would have been afraid of dying if I had been hysterical."

The choice for children

Dwight Evans and Susan Severson were high school sweethearts, meeting at Chatsworth High School in California's San Fernando Valley when they were 15, marrying three years later.

They wanted four children and didn't let the genetic condition that was definitely diagnosed when Tim was a year old deter them.

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