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Timothy Evans, whose life with neurofibromatosis raised awareness and research funding, dies at 47

From left, Dwight, Kirstin, Tim, Justin and Susan Evans pose for a family photo, July 3, 1978.
From left, Dwight, Kirstin, Tim, Justin and Susan Evans pose for a family photo, July 3, 1978.Jack O'Connell/Globe Staff/The Boston Globe

Ten months after his younger brother, Justin, died of an incurable genetic disorder that they both had been treated for with dozens of surgeries, Timothy Evans died Saturday in Fort Myers, Fla., to which he had moved a few years ago.

He was 47 and had undergone 44 surgeries since symptoms of neurofibromatosis first appeared a few months after he was born.

Tim was the oldest of three children born to legendary Red Sox outfielder Dwight Evans and his wife, Susan, who with their family helped raise awareness about neurofibromatosis.

The family also ran fund-raisers for research, and have been longtime supporters of Burlington-based Neurofibromatosis Northeast. That organization and the national NF Network are working to find treatments and a cure.

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“He always had a tremendous sense of humor,” Susan said Monday of Tim, who early on had developed tumors near his left eye. “He loved watching these hysterical movies and telling jokes.”

For more than two decades, Tim had worked in the copy center of the Massachusetts Bay Transportation Authority. Health concerns eventually led him to stop working.

Like Justin, who was 42 when he died last year on Easter Sunday, Tim had developed a glioblastoma brain tumor near the end of his life, and he had made the decision to stop treatment.

“Anybody who’s lost a child, I don’t care how old they are, it’s devastating,” Dwight said Monday.

Along with Dwight and Susan, who live in Lynnfield and Fort Myers, Fla., Tim leaves his wife, Susana, whom he married in 2015, his sister, Kirstin of Sudbury, and her children, Ryan, Michael, Alyssa, and Darren Berardino.

The family is planning a graveside service in Massachusetts which, at Tim’s request, will be private.

“Our kids are on loan from God,” Dwight told WCVB-TV’s Maria Stephanos last July, after Justin had died and Tim had ceased treatment for his brain tumor. “And we’re doing the best we can. We really are trying to do the best we can with them.”

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A full obituary will be published later.


Bryan Marquard can be reached at bryan.marquard@globe.com.