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

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.

Comments

[main945]

08:39 PM on 04/19/2012

What a cutie. His picture haunts you. My son lost a best friend at 10. What a crewel thing to happen to a mother and child. We love all the little lost souls and miss them.

[mollymac]

12:52 PM on 04/19/2012

precious little one.

[livefreeordie87]

08:54 AM on 04/19/2012

Thank you for posting this article. I live in NH and my mother and I were inspired by Gio and went to one of the bone marrow registry parties and had a great time and since have been following his story. What a strong and inspiring family.

[PiratesForObama]

06:10 AM on 04/19/2012

Incredible that such a tiny voice can inspire and move so many.

That is the power when you put a face and a life to a cause regarding life or death.

Such that it should be for the HC debate that millions upon millions are in the same hardship of life and require help as well. They might be tiny of frame but have just as much spirit ...

..the spirit to live.