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May 12. 2012 11:18PM
Giovanni Guglielmo with his mother, Christina Poulicakos, in May 2010. (MICHAEL BLANCHARD PHOTOGRAPHY)
Michael Guglielmo, the father of the late Giovanni Guglielmo, was at Manchester Harley-Davidson on Friday to promote a bone marrow donor kiosk. (DAVID LANE/UNION LEADER)
Boy's death fuels family's mission
Giovanni Guglielmo with his mother, Christina Poulicakos, in May 2010. (MICHAEL BLANCHARD PHOTOGRAPHY)
Michael Guglielmo, the father of the late Giovanni Guglielmo, was at Manchester Harley-Davidson on Friday to promote a bone marrow donor kiosk. (DAVID LANE/UNION LEADER)
The father of “Baby Giovanni,” whose brief life touched so many here and abroad, has an idea for the perfect gift this Mother's Day: “Join the bone-marrow registry. Save a life.”
“Do it for Giovanni,” Michael Guglielmo pleaded.
His son was born with a genetic immune deficiency known as NEMO syndrome. A stem-cell transplant in 2007 saved the child's life, and his story inspired thousands to register as potential donors.
Giovanni died at 2:32 a.m. on April 16 — the night of Easter in his mother's Greek Orthodox tradition — after being rushed to a Boston hospital with complications from chronic colitis.
His mother held her little boy and sang “You Are My Sunshine” as they removed the life support, Guglielmo said. “We surrounded him with everyone who loved him and we sent him to the heavens,” he said.
In his five short years, Giovanni had captured hearts around the world, from his native New Hampshire to his father's ancestral land of Italy.
Now his parents are continuing the cause they began shortly after their son was born: to sign up every potential bone-marrow donor they can.
Here's what Guglielmo, who lives in Belmont, wants people to remember: “That could be your baby. And he lived because somebody donated stem cells.”
“And you can save a Giovanni by joining the bone-marrow registry and giving somebody the gift of life if you're a match ... What greater honor could you have?”
Giovanni's mother, Christina Poulicakos of Concord, said she thinks often of the anonymous mother who donated the umbilical-cord blood that helped Giovanni. “I'm very grateful I got almost six years,” she said.
Adjusting to life without Giovanni, who was spunky and sociable despite his many medical issues, has been a struggle, Poulicakos said.
“My days and nights were consumed with doing stuff for him. Without him, I have no structure,” she said. “It was all for Giovanni. Our house is very quiet now.”
Her two older sons, 11-year-old Alex and 8-year-old Adrian, comfort her even as they grieve for their mischievous little brother, she said.
Another son, Andreas, died in 2002 at the age of eight months; it was only after Giovanni was diagnosed that she realized the same disorder had taken Andreas, her second-born.
Today, Poulicakos said she'll go with her two boys to the cemetery where Giovanni and Andreas are buried. “I'll have all four of them with me,” she said.
Giovanni's parents continue to be donor recruiters for DKMS Americas, which tests and registers potential bone-marrow donors free of charge.
Guglielmo recently came up with the idea of putting electronic kiosks in public locations, where people could learn about becoming a donor and sign up for easy at-home testing.
He contacted the folks at Advanced Kiosks in Franklin, who produced just what he wanted. Kiosks are now up at Manchester Harley-Davidson and Spider Bite Salon in Manchester and the YMCA, Office Suites and Trilogy Hair Salon in Concord. Guglielmo hopes this will be just the beginning.
“The objective of DKMS is to register every eligible person in the world to fight blood cancer,” he said. “If it works in New England, we're going to go worldwide with it.”
When doctors told Giovanni's parents their son would not live past his first year without a bone-marrow transplant, they set out to find a match, holding registration drives and telling Giovanni's story.
The chances of finding that match were one in 20,000, doctors told them; five years later, drives held in Giovanni's honor have signed up more than 50,000 people.
Their little boy has saved other lives as well; there already have been 143 matches, his parents said.
Twelve of those matches were students at Saint Anselm College in Manchester.
Dan Forbes is director of the Meelia Center for Community Engagement at the Roman Catholic college.
The very first registration drive at the school five years ago resulted in two matches. “It is outright phenomenal,” Forbes said.
Most bone-marrow donations can be done by drawing blood from a person's arm, Forbes noted. And even those that involve a more complicated medical procedure, done under anesthesia, are worth any discomfort involved, he tells students.
“You could save a life. What wouldn't you do if that was the case?” he asks.
St. Anselm College is eager to get one of the new kiosks, Forbes said, adding he hopes to take it to other campuses to register students as well.
Forbes believes there's “something spiritual” about the high rate of matches found on his small campus, “something that can't be explained by the usual statistics.”
He attributes that something to the little boy with the big blue eyes. “There's something about his presence on this earth that touched people and got them to do something which is so simple, but for whatever reason has been so difficult to get people to do.”
Guglielmo has no patience for those who say they're afraid of the procedure because it might hurt. “You know what hurts? Dying hurts,” he said. “And watching a baby die, that hurts.”
Two weeks ago, Guglielmo attended the annual gala for DKMS; he draped the empty chair next to him with Giovanni's favorite blanket.
Guglielmo has known dark times before in his life. He spent time in state prison after firing more than 100 rounds at Manchester police during a 1985 standoff. He was just 23; “I was a thug,” he says now.
But he said, “When I had that beautiful baby boy, it just changed my life.”
His son's funeral was attended by Gov. John Lynch, “mobsters” and “everything in between,” he said.
And perhaps most touching of all, “The Manchester police, they escorted my son to his grave.”
Guglielmo said Giovanni loved the movie “Gladiator,” and since losing his son, he's thought about a line from that film a lot: “What we do in life echoes in eternity.”
“And this kid, truly what he has done is going to echo for eternity.
“Because we're going to continue to put people in the bone-marrow registry, we're going to continue to find matches and we're going to continue to save lives. And it's because he inspired that within us.”
For more information about becoming a bone-marrow donor, go to www.getswabbed.org.
“Do it for Giovanni,” Michael Guglielmo pleaded.
His son was born with a genetic immune deficiency known as NEMO syndrome. A stem-cell transplant in 2007 saved the child's life, and his story inspired thousands to register as potential donors.
Giovanni died at 2:32 a.m. on April 16 — the night of Easter in his mother's Greek Orthodox tradition — after being rushed to a Boston hospital with complications from chronic colitis.
His mother held her little boy and sang “You Are My Sunshine” as they removed the life support, Guglielmo said. “We surrounded him with everyone who loved him and we sent him to the heavens,” he said.
In his five short years, Giovanni had captured hearts around the world, from his native New Hampshire to his father's ancestral land of Italy.
Now his parents are continuing the cause they began shortly after their son was born: to sign up every potential bone-marrow donor they can.
Here's what Guglielmo, who lives in Belmont, wants people to remember: “That could be your baby. And he lived because somebody donated stem cells.”
“And you can save a Giovanni by joining the bone-marrow registry and giving somebody the gift of life if you're a match ... What greater honor could you have?”
Giovanni's mother, Christina Poulicakos of Concord, said she thinks often of the anonymous mother who donated the umbilical-cord blood that helped Giovanni. “I'm very grateful I got almost six years,” she said.
Adjusting to life without Giovanni, who was spunky and sociable despite his many medical issues, has been a struggle, Poulicakos said.
“My days and nights were consumed with doing stuff for him. Without him, I have no structure,” she said. “It was all for Giovanni. Our house is very quiet now.”
Her two older sons, 11-year-old Alex and 8-year-old Adrian, comfort her even as they grieve for their mischievous little brother, she said.
Another son, Andreas, died in 2002 at the age of eight months; it was only after Giovanni was diagnosed that she realized the same disorder had taken Andreas, her second-born.
Today, Poulicakos said she'll go with her two boys to the cemetery where Giovanni and Andreas are buried. “I'll have all four of them with me,” she said.
Giovanni's parents continue to be donor recruiters for DKMS Americas, which tests and registers potential bone-marrow donors free of charge.
Guglielmo recently came up with the idea of putting electronic kiosks in public locations, where people could learn about becoming a donor and sign up for easy at-home testing.
He contacted the folks at Advanced Kiosks in Franklin, who produced just what he wanted. Kiosks are now up at Manchester Harley-Davidson and Spider Bite Salon in Manchester and the YMCA, Office Suites and Trilogy Hair Salon in Concord. Guglielmo hopes this will be just the beginning.
“The objective of DKMS is to register every eligible person in the world to fight blood cancer,” he said. “If it works in New England, we're going to go worldwide with it.”
When doctors told Giovanni's parents their son would not live past his first year without a bone-marrow transplant, they set out to find a match, holding registration drives and telling Giovanni's story.
The chances of finding that match were one in 20,000, doctors told them; five years later, drives held in Giovanni's honor have signed up more than 50,000 people.
Their little boy has saved other lives as well; there already have been 143 matches, his parents said.
Twelve of those matches were students at Saint Anselm College in Manchester.
Dan Forbes is director of the Meelia Center for Community Engagement at the Roman Catholic college.
The very first registration drive at the school five years ago resulted in two matches. “It is outright phenomenal,” Forbes said.
Most bone-marrow donations can be done by drawing blood from a person's arm, Forbes noted. And even those that involve a more complicated medical procedure, done under anesthesia, are worth any discomfort involved, he tells students.
“You could save a life. What wouldn't you do if that was the case?” he asks.
St. Anselm College is eager to get one of the new kiosks, Forbes said, adding he hopes to take it to other campuses to register students as well.
Forbes believes there's “something spiritual” about the high rate of matches found on his small campus, “something that can't be explained by the usual statistics.”
He attributes that something to the little boy with the big blue eyes. “There's something about his presence on this earth that touched people and got them to do something which is so simple, but for whatever reason has been so difficult to get people to do.”
Guglielmo has no patience for those who say they're afraid of the procedure because it might hurt. “You know what hurts? Dying hurts,” he said. “And watching a baby die, that hurts.”
Two weeks ago, Guglielmo attended the annual gala for DKMS; he draped the empty chair next to him with Giovanni's favorite blanket.
Guglielmo has known dark times before in his life. He spent time in state prison after firing more than 100 rounds at Manchester police during a 1985 standoff. He was just 23; “I was a thug,” he says now.
But he said, “When I had that beautiful baby boy, it just changed my life.”
His son's funeral was attended by Gov. John Lynch, “mobsters” and “everything in between,” he said.
And perhaps most touching of all, “The Manchester police, they escorted my son to his grave.”
Guglielmo said Giovanni loved the movie “Gladiator,” and since losing his son, he's thought about a line from that film a lot: “What we do in life echoes in eternity.”
“And this kid, truly what he has done is going to echo for eternity.
“Because we're going to continue to put people in the bone-marrow registry, we're going to continue to find matches and we're going to continue to save lives. And it's because he inspired that within us.”
For more information about becoming a bone-marrow donor, go to www.getswabbed.org.
