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Giovanni Guglielmo, 5, Dies From Rare Disease; Inspires Almost 50,000 To Give Bone Marrow

Posted: 04/18/2012 5:50 pm

Giovanni Guglielmo

In his five short years, Giovanni Guglielmo inspired a true miracle.

Giovanni was diagnosed with a rare genetic immune disorder at five months old, requiring doctors to create a new immune system for him, according to his site. Gio, as the young boy is lovingly called, has since prompted almost 50,000 people to register as bone marrow donors.

The young New Hampshire resident succumbed to his fight against NEMO, or nuclear factor Kappa B essential modulator, Monday at the Children's Hospital Boston. His mother, Christina Poulicakos, told the New Hampshire Union Leader that life support was removed at 2:32 a.m.

“This boy suffered in less than six years more than 10 men suffer in a lifetime,” Michael Guglielmo, Gio's father, told the Boston Herald. “That was our baby’s last fight. He ran out of fight. He ran out of miracles.”

But Gio wasn't the only one who put up a valiant fight. Refusing to feel dismayed by their son's 1 in 20,000 chance of finding a bone marrow match, Gio's parents organized a campaign to save their son's life. In 2007, an Italian national who worked with Giovanni's foundation in Boston went on Italian television to ask the country to help the young boy, according to the Boston Herald. Within minutes, she had received hundreds of emails of support -- prompting Italy's first bone marrow drive in attempt to match the young boy's Greek and Italian heritage.

“Many people told me just by looking at his picture, they could see his energy,” Levantini told the Herald. “You can see in his eyes that he was put on this earth for a purpose. People were drawn to him.”

Now, just because Gio's battle has ended, doesn't mean his family is done advocating.

Working with DKMS, a bone marrow registry organization, the family is still hoping to save lives by encouraging bone marrow donations.

“It’s the end of Giovanni," Guglielmo told nashuatelegraph.com, "but it’s not the end of his legacy.”

Several bone marrow drives are being set up in honor of Gio, including one in Boston and New Hampshire.

To learn more about bone marrow registry, click here.

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Filed by Emily Heinz  |