When the headaches began, Tony Minori was doing what he usually did with his time off –volunteering.
Minori and his wife, Joanne, had been volunteering at the Pop Warner Annual Super Bowl at Disney World for years, and last December was no different. His headache was so severe, however, that he left the event early and flew home to Raleigh.
Minori, just a few days after he had turned 49, seemed too young to have suffered a stroke, but a brain scan showed there had been a bleed.
Further examination revealed it was Moyamoya, a brain disease in which the arteries become constricted and blood clots form. In the next few weeks, the Minoris learned one unbearable detail after the other concerning this rare condition. They found only nine other North Carolinians living with the illness. It typically affects Asians and young women, and it was thought to be incurable, save for a potentially life-extending measure, highly specialized brain surgery.
Minori spent the next nine months recovering from the initial brain bleed, as well as enduring one headache after the other. When faced with living out his days in pain, he and his family decided to risk neurosurgery to repair the damage. This revascularization procedure was his only option.
“It was just a matter of time until he stroked again if he didn’t have surgery,” Joanne Minori said.
Minori, an IT supervisor for WakeMed Health and Hospitals, survived the surgery in August, but days later developed several more brain bleeds that led to his death last month.
Though his loved ones had been preparing for the possibility, his community is struggling with his loss. Minori loved his job, but he was best known for his community involvement. It stretched from the Raleigh Moose Lodge No. 1318 to Girl Scouts, to stints as coach for many a local sports team. He often worked with teams that didn’t include his own children.
“I’d never met anybody like him and Joanne,” longtime friend Sam Sexton said. “They are so committed to helping others.”
Living for family, football
Minori, the youngest of eight children, was raised in Mechanicsburg, Pa., and was an avid Pittsburgh Steelers fan.
“We bleed black and gold in this house. He lived for football season,” his wife said.
His three daughters were heavily involved on the sidelines, first as cheerleaders with Pop Warner, later as athletic trainers.
“Dad got very lucky in that he had three girls that all really enjoy football,” said his eldest, Meg Minori.
Tony Minori didn’t limit his community involvement to the gridiron. As his daughters earned their wilderness badges in Girl Scouts, Minori was happy to be back at camp, setting up the tent and cooking dinner.
“Everything we did, we did together as a family. We did Pop Warner together, we did Girl Scouts. He was a card-carrying Girl Scout,” his wife said.
All three of his daughters served as athletic trainers at Knightdale High School. When Meg Minori was a sophomore in 2008, her dad began volunteering as a statistician under those Friday night lights.
“He always just had a way of getting super involved in everything he had going on in his life. He always had a hand in something,” Meg Minori said.
Steelers above all
Minori clearly placed a premium on relationships.
Friends say he was remarkably good at keeping in touch, never going long without sending a text message or calling with an invite for friends to come over for dinner.
He also never wasted an opportunity to “recruit” new Steelers fans.
His friend Bill Bullard, a longtime Dallas Cowboys fan, knew a thing or two about that tendency.
“He was good at sticking little Steeler helmet stickers on my vehicle in places I wouldn’t notice,” he said with a chuckle.
When Bullard underwent open-heart surgery in Washington, D.C., Minori went so far as to have his nephew sneak into Bullard’s hospital room and place a token of his love for him, along with a poem, albeit comical, about how he couldn’t wait for Bullard to get back home.
“That gave me the levity to get through one of the worst days of my life,” Bullard said.
‘That was the highlight’
In recent years, the night before Knightdale’s biggest game against its rival, East Wake High School, the Minoris asked the entire football team to dinner at their home.
“It was the Minori’s annual ‘Feed the Boys,’ ” Joanne Minori said. “That was the highlight of Tony’s football season, seeing the boys in full uniform come off the bus.”
Though his youngest daughter still is a senior at Knightdale High, Minori resigned from his post as a statistician earlier this year. Though he planned to attend games as a parent, he was afraid his brain would have a hard time processing the numbers from the press box this time around.
Joanne Minori plans to host one more Feed the Boys dinner. The football helmet the entire team signed in his memory will likely be a centerpiece at the Minori table.
For more information on Moyamoya disease visit www.moyamoya.com.