Setting a life-saving goal in memory of Giovanni

New Hampshire Union Leader
April 24. 2013 11:49PM
Michael Guglielmo, of Belmont, brings flowers to his son's gravesite, Giovanni Guglielmo, at the Pine Grove Cemetery in Manchester Wednesday. Giovanni died April 2012 of NEMO, a rare genetic disease. Michael Guglielmo is in the midst of an ambitious series of bone-marrow registration drives run by Delete Blood Cancer, the organization for whom he serves as an ambassador. (Mark Bolton/Union Leader)

MANCHESTER - While uncertain he will reach his goal of registering 4,000 potential bone marrow donors in the month of April, Michael Guglielmo remains determined to get as close as he can.

Guglielmo is driven by the memory of his son, Giovanni, who died last April after battling a rare immune deficiency for all of his short life. A stem-cell transplant did not save him, but did extend the young boy's life for nearly six years and set Guglielmo on a mission to recruit bone marrow donors.

Guglielmo said Wednesday he has registered 3,100 already this month and has seven donor drives set up over a four- day span to try to meet his goal for the month, which is part of a much more ambitious effort.

"My goal is to turn New England into the life-saving states and register 100,000 people," said Guglielmo, regional donor recruitment coordinator for the organization Delete Blood Cancer. "We have registered one out of every 80 people in New Hampshire alone."

Guglielmo chose this month to make his push for 4,000 because he lost Giovanni on April 15, 2012.

Guglielmo's efforts date back to his first donor drive in January 2007, when 17 people braved a snowstorm to be tested at a salon in Laconia.

"It all started when they told me 'your son will die before his first birthday if you don't find a match for him,'" he recalled.

Guglielmo asked what the chances of finding a match were and was told one in 20,000.

"I said no problem. I'll put 20,000 people on the registry," he said. "They looked at me like I was crazy."

Guglielmo surpassed 20,000 years ago but has not stopped. One of his upcoming drives is Friday at the University of New Hampshire in Durham, where a student this week made national headlines when he decided to give up the end of his career as a track and field athlete when the National Marrow Donor Program informed him he was a match for a 28-year-old fighting an aggressive form of leukaemia.

The urgency of the transplant did not allow Cameron Lyle to put it off and throw the discus and shot put a few more times for UNH at the end of the season. Lyle decided another person's life was more important than setting personal bests and agreed to the procedure, which was scheduled for Wednesday at Massachusetts General Hospital in Boston.

Guglielmo was touched when he read Lyle's story. Guglielmo said he hopes to meet Lyle some day, shake his hand and say thanks.

"That's noble. There's nothing more noble in life than to give life," Guglielmo said. "I think it's great. The more kids that step up and show people it's a small sacrifice to give somebody life, the better."

Guglielmo was speaking at Pine Grove Cemetery next to Giovanni's grave, which is another example of the lengths he will go to when he believes in a cause.

Guglielmo successfully challenged the city's restriction on grave-side memorials after noticing mementos he had left at his son's grave had been removed and thrown in the garbage. He launched a campaign in July to get the city to allow an exception for the graves of children under the age of 16 and never let up, using social media to gain support from across the country and internationally.

In November, the Manchester Parks, Recreation and Cemetery Commission agreed to allow items to be placed within a "well maintained" border in front of gravestones. Approved on a trial bases, Guglielmo said he expects it to stick as he pointed out Giovanni's grave and others around it neatly adorned with flowers and other tokens of remembrance.

Giovanni's site includes some of his toys, as well as a plastic sword and helmet Guglielmo said his "Little Gladiator" loved to wear. "Gladiator" was the child's favorite movie and his gravestone features a quote from it - "What we do in life echoes in eternity."

Guglielmo said it is fitting because a little boy who didn't reach his sixth birthday has inspired more than 50,000 people to register as potential marrow donors. The family actually found a match for Giovanni in umbilical cord stem cells and the transplant took place in 2007.

"Before I hit 10,000 people we found Giovanni's match through cord blood, but I kept doing it because I had made a pledge," said Guglielmo, whose New Hampshire license plate reads SAVELIF. "When I hit 10,000 people I changed my goal to 100,000."

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