Giovanni Michael Guglielmo
Miracle baby,’ family triumph
By Marie Szaniszlo
Sunday Boston Herald
August 31, 2008
This is a story of triumph over staggering odds. But more than that, it is a story of love and redemption, of one couple’s struggle to save their infant son from a rare genetic disorder. And of an infant who helped save his father from his past and, in doing so, changed thousands of other lives.
Giovanni Guglielmo plays with mom
Christina Poulicakos at their
NH home recently
Illness and inspiration
Maybe it was his eyes, two pools of blue in which people found themselves somehow reflected. When Giovanni’s photo and story first appeared in the Boston Herald on Jan. 7, 2007, dozens of people called Children’s Hospital Boston, offering to donate bone marrow. Doctors had told his parents the chances of finding an exact match for the desperately sick infant were about 1 in 20,000.
“I said, ‘Well then, I’ll add 20,000 people to the bone marrow registry,’ ” his father remembered. “They looked at me like I was crazy.”
A year and a half later, Michael Guglielmo, by his own count, has added 16,630 prospective donors to the registry, with 12 matches. “It’s truly been amazing,” said Alissa Ausan, supervisor of recruitment operations for the National Marrow Donor Program. “The biggest challenge we face is raising awareness of the need for bone marrow donors. And Giovanni’s story has inspired countless people across the globe to join the registry.”
Giovanni was diagnosed with NEMO, or nuclear factor Kappa B essential modulator, at Children’s Hospital about 18 months ago. The rare genetic disorder attacks the immune system. Back then, doctors estimated the baby had a 50 percent chance of surviving - if he received a bone-marrow transplant at Children’s Hospital Boston. On any given day, 6,000 people worldwide are searching for a bone-marrow match and only three out of 10 find one, according to the National Marrow Donor Program. The rest either find an alternative treatment - or die waiting.
Guglielmo, 45, is an imposing man with a Fu Manchu mustache and a criminal record. He didn’t want Giovanni to wait. He began organizing bone-marrow drives, enlisting the help of everyone from the Red Cross to the head of the SWAT team who once gave the greenlight to kill him. Giovanni’s story even made its way across the Atlantic to his family’s ancestral homeland, inspiring the first bone-marrow drive in Italy’s history and a campaign to make him an honorary citizen. A Web site called SheKnows.com this summer kicked off a campaign to add 50,000 people to the bone-marrow registry by posting Giovanni’s photo on a billboard in Times Square. “He’s a fighter,” Erica Schrag, a spokeswoman for SheKnows.com, said of Giovanni. “His parents eat, sleep and breathe his cause. They’ve done so much to champion it, that it was definitely something we wanted to partner with.” Michael Guglielmo came a long way to be called a champion.
Michael’s story
On a bitterly cold day in December 1985, Michael Guglielmo kicked in the door of a Manchester, N.H., home and sprayed the kitchen with bullets. By the time he got to the bedroom, the drug dealer he had come to kill dove out the window and ran to a neighbor’s home to call for help. Within minutes, the place was surrounded by police.
Michael was 23 at the time and had been alternating between snorting cocaine and chugging Scotch and vodka in the days leading up to the standoff. For five hours, he kept the SWAT team at bay by firing off 200 rounds out the window before he ran out of ammunition. The machine gun still strapped to his body, a can of Budweiser in one hand, Guglielmo finally opened the door, threw out the gun’s clips and grudgingly surrendered. “Ever since I was a kid, my vision of the ideal death was to go out in a blaze of gunfire, like in the old James Cagney movies,” he says. “This was just the coup de grace.”
What fueled his rage, other than drugs and alcohol, he can only guess. As a child, “I couldn’t compete with other kids academically,” he said. “So I competed physically and by getting into trouble.”
By age 12, he was arrested for stealing a 9 mm pistol that a candy store owner kept for protection. By 23, he’d racked up nearly a dozen other arrests for everything from leading police on a car chase to stabbing a gang leader and then beating his associates with a baseball bat to keep them from testifying against him. This time, he would not get off easily. The price of his standoff with police? Seventeen years behind bars.
Ironically, he says today, prison saved his life. “It put me in a position where I had to change or sacrifice my life.” In prison, he got his GED, then a bachelor’s degree in paralegal science through correspondence courses at Ohio University. Guglielmo also earned a master’s in political philosophy from California State University. He sent his master’s thesis to the judge who had sent him to prison, and the judge was so impressed that he came out of retirement to advocate for his release at a sentence-reduction hearing.
But life after prison was daunting. He called a dozen landlords before he found one who would rent an apartment to a convicted felon. And the only job he could find was as a $7-an-hour dishwasher until a friend from prison hired him as a roofer. In October 2003, he ran into Christina Poulicakos’ sister. He had known Christina since she was 13, and she had visited him once in prison but eventually married. So when he heard that she was getting a divorce, he told her sister to give her his number. Christina called the next day and they have been together since. “I think prison put things into perspective for him,” she said. “And in me and Giovanni, he found something that was actually his, something that wasn’t going anwhere and would love him unconditionally.” Then, on the terrible winter day Christina, now 36, left with Giovanni in an ambulance to Boston, Michael walked back to their car with their empty child carrier and a handful of “Get well” balloons, tears streaming down his face. “My son was dying.”
The miracle baby
Giovanni spent 6 months at Children’s Hospital, and his parents and other relatives stayed with him around the clock so that he would never wake up and be alone. NEMO typically is treated through a transplant of stem cells taken from either umbilical cord blood or bone marrow. Because by March 2007 a match for Giovanni still had not been found, doctors at Children’s decided to try an alternative treatment: a stem cell transplant using blood from an umbilical cord to help him build a new immune system.
The surgery was successful, and in May 2007, after a six-month, life-and-death struggle that touched people from Boston to Rome, Giovanni went home, wearing a tiny Superman costume.
Since his release from the hospital in May 2007, he has returned for monthly checkups and been hospitalized in intensive care once for viral pneumonia. But his prognosis is good. “This is a long haul for families. I tell them it’s a marathon, not a sprint,” said Dr. Leslie Lehmann, director of the pediatric stem cell transplant program at the Dana Farber Institute-Children’s Hospital. “But he’s a fighter,” Lehmann added, “and his parents have been amazing advocates for him. Our prediction is he will grow to be healthy and happy.”
Michael Guglielmo has not stopped fighting for other people who need bone-marrow transplants. He now works for the bone marrow donor agency DKMS as New England regional coordinator.
“He has a lot of fire and energy and ambition,” said Katharina Harf, vice president of DKMS Americas. “And we’re seeing real results.” Giovanni still is fed through a tube because he has difficulty swallowing. And the only words he knows are “Mama” and “Dada.” Although he is expected to speak normally one day, his parents have begun to teach him sign language. The family lives in Belmont, N.H., with Christina’s two young children from her first marriage. When Giovanni is not signing the words “more” and “food,” he is crawling around on the floor of their Colonial home, wrestling with his stepbrothers and generally wreaking havoc, his father says happily. “He’s the miracle baby,” Guglielmo said. “He survived.”