From infancy onward, even in those years before memory takes hold, neurofibromatosis affected Tim Evans’s life in ways seen and unseen.
"Tim was one of the strongest people I’ve ever met,” said his mother, Susan. "I don’t know how he endured all that he did.”
He was 47 when he died Saturday of complications of the genetic disorder – the same one from which his younger brother, Justin, had died just 10 months earlier.
Tumors the disorder had caused to grow near Tim’s left eye announced his illness to the world, but the pain he experienced was more than skin deep. Children being children, each year he spent in school as a boy brought teasing and staring.
Those who became his friends, though, soon learned that Tim had a wide-ranging sense of humor that encompassed lines memorized from comedy movies and slyly tucking away garter snakes in places people least expected, or wanted, to find them.
His loyalty, meanwhile, was unsurpassed.
"I’m going to miss him because he would text me three or four times a day,” said his father, Dwight Evans, a former All-Star Red Sox outfielder. "He became my best friend. Not only my son, but my best friend.”
In late spring last year, a month after Justin died on Easter Sunday at the age of 42, Dwight’s brother David died of heart failure, at 72.
"He died peacefully,” Dwight said of David. "My brother was four years older than me. That’s kind of in the order of things. Losing my brother hurt, but it was nothing like losing Justin, and now losing Tim.“
Dwight added that "it hurts to lose a sibling, but losing a child” — and there he paused, his voice trailed off, and he couldn’t continue.
Over much of the past four decades, the Evans family has raised money for research and highlighted the efforts of advocacy organizations such as what is now Neurofibromatosis Northeast, based in Burlington, and the national Neurofibromatosis Network.
More difficult to quantify, however, are the number of lives Tim and Justin — and their parents and sister, Kirstin — touched and inspired through their candor.
Along with fund-raisers such as the golf tournaments they held, Dwight and Susan spent many years personally raising awareness about neurofibromatosis. Doing so inevitably meant opening their lives and the family’s medical travails to public view.
In a Boston Globe interview 40 years ago, Dwight let the world see what families like his face while trying to uncover what ultimately was a devastating diagnosis.
"At first we didn’t know what was wrong,” he said in 1980. "When Timmy was about 3 months old, he had a swollen eyelid. We took him for allergy tests, but the eye just kept getting worse. Finally, after seeing about 97 doctors — by that time Timmy was 2 or 2 1/2 – it was finally diagnosed as NF.”
Dwight and the family were that open and honest even before Justin was also diagnosed with neurofibromatosis.
The oldest of three siblings, Timothy Scott Evans was born in Van Nuys, Calif., on Feb. 14, 1973 — a valentine to his parents, Dwight Michael Evans and Susan Severson, who had been high school sweethearts.
"Dwight and I married at 18 and started out thinking we were going to have this incredible life,” Susan said. "We’d have six kids and everything was going to be perfect.”
Life changed when Tim was diagnosed with neurofibromatosis as a toddler and began what would become dozens of operations. Surgeons would remove parts of tumors, only to see them grow back.
One doctor likened the process to "taking up one piece of sand on the beach,” Susan said. The space left behind simply "all fills in with more sand.”
The operations and tumors disfigured the area around Tim’s left eye, which in turn created emotional and physical hurdles.
"The hardest thing is that Timmy believes that he’s done something wrong and he’s being punished,” Susan told the Globe in 1980, when Tim was 7. "I remember when I was a teenager and I would be embarrassed and self-conscious if I got a pimple on my face.”
And yet, Susan said earlier this week, "he was a wonderful happy kid, always laughing and smiling.”
She added that Tim "always had a tremendous sense of humor. He loved watching these hysterical movies and telling jokes.”
Throughout the years that Tim, and then Justin, faced surgeries and life-threatening medical challenges, Dwight and Susan credited the family’s Christian faith with helping provide strength.
That started early, too.
"Last week, Kristin started praying at supper time,” Susan recalled in 1980, when the three Evans children were age 7 and younger. "She always asks God to help Timmy’s eye. They’re great to each other. If it wasn’t for God, I don’t know how we’d do it. He gives us strength.”
After high school, Tim did masonry work and even dug graves in the Lynnfield cemetery where he will be buried next to his brother. Landing a job in the copy center of the Massachusetts Bay Transportation Authority, he stayed for 23 years, his father said.
Along with setting an example for others diagnosed with neurofibromatosis, and showing friends and colleagues he met during his life how to surmount adversity daily, Tim inspired his parents.
"He changed Dwight and I into people who were more compassionate toward anybody who had a disability,” Susan said.
A few years ago, Tim moved to Fort Myers, Fla., and near the end of his life he developed a glioblastoma brain tumor. Eventually, he decided to stop treatment.
"Three weeks ago Tim said, 'Mom I’ve got to tell you about a dream I had. I was dreaming and I looked up and saw Jesus reaching to take my hand, and right behind him was Justin,’ ” Susan recalled. "And that was a blessing.”
Tim leaves his wife, Susana, whom he married in 2015; his parents, Dwight and Susan, who live in Lynnfield and Fort Myers, Fla.; his sister, Kirstin of Sudbury; and Kirstin’s children, Ryan, Michael, Alyssa, and Darren Berardino.
At Tim’s request, the Evans family will hold a private graveside service in Massachusetts.
"Anybody who’s lost a child, I don’t care how old they are, it’s devastating,” Dwight said this week.
How do he and Susan carry on after losing two of their three children to the same incurable illness?
They rely on each other, and on their faith, but each day brings moments when it feels as if Justin, and now Tim, can’t really be gone.
"On one hand, we’re so happy he’s not in pain anymore,” Susan said of Tim. "And yet, you’re just waiting for him to call, or to go see him, or do something with him. It’s so fresh, all of this, from Justin to Tim. I still go to call Justin. I will do that forever, probably. Every time I got in the car, I would call Justin and call Tim.”
Bryan Marquard can be reached at firstname.lastname@example.org.