GIOVANNI'S STORY

by Sarah Caron

Like most great things, it all started with an idea. Michael Guglielmo just wanted to find a donor that matched his son. But the donor drives inspired by baby Giovanni have gone well beyond the initial intention and launched an international movement to register bone marrow donors in hopes of saving more lives.

"When I first started this, I had one objective, and that was to save my son's life. I was just determined to do whatever I could to save my child. It's like a crusade for me," Guglielmo says.

Baby Giovanni, the poster child for the movement, recently turned two on July 24. It's a milestone for the young boy who hasn't yet walked. He was diagnosed with a rare chromosomal disorder called NEMO when he was just months old. The life-threatening disease was only discovered recently and is known to infect about 60 children worldwide. The only way that Giovanni could survive his NEMO condition is through a bone marrow transplant.

It's been more than a year since Giovanni received his transplant with cord blood cells. The closest bone marrow match was in Italy, however a cord blood match was found in the U.S. In terms of transplants, it's getting past that first year that's necessary for a patient to be deemed a success case. He's there. If the indicators are right, then the little boy who once was hooked up to dozens of monitors and machines will soon catch up to his contemporaries physically. Psychologically, he's right on track, his parents say.

"We're confident that he'll completely catch up," says Guglielmo.

A mother's worst nightmare
Mom Christina Poulicakos says that Giovanni's illness was hard on their whole family, including his two older brothers, who are four and seven. As a mother, though it was excruciating. "I can't even describe it. It's unbearable. It's hell. There's a lot of weight on your shoulders," she says.

The worst part, she says, was being helpless to take away Giovanni's pain. "Watching him go through everything, you can't do anything. [It was awful] watching him suffer. As a mother, you really have to rely on other people."

Hope for the future
Both Guglielmo and Poulicakos say that they want one thing for their son: to see him thrive. They also look forward to the day when he will take the reins of the international bone marrow donor registry drive movement that his story sparked. "I hope that he's the leader of the premier non-profit [for bone marrow registries]," says Guglielmo. Organizations from Teamsters to Clear Channel Broadcasting to the Boston Red Sox have aided in the efforts to gather potential bone marrow donors. Families have even opened their homes to drives.

The "Save Giovanni's Friends" drives have collected more than 13,600 potential donors thus far. With 173 drives under their belts since the drive began on January 17, 2007, another 47 drives are planned through December with more being added all the time. So far, nine matches have been found and nine transplants have been completed due to the drive efforts.

Giovanni's story has made an international impact in a positive way. He is credited with being the inspiration behind Italy's first ever bone marrow registration drive. Pope Benedict XVI has also issued a papal blessing for the boy.

Help the movement
Are you a bone marrow donor? If not, it is simple to sign up. The potential for saving a life is staggering. "What I really want people to do is recognize that becoming a bone marrow donor is no longer a painful process," Guglielmo says.

The process, he says, involves a one page application and two cotton swabs. If you are a match at some point - and the chances are rare that you will be - 80 percent of the cases involve a procedure similar to giving blood. In 20 percent of the cases, marrow is taken from the pelvic area. The recovery from that is like a bruised butt, says Guglielmo.

Most people are eligible, however certain conditions like severe asthma or recent pregnancy could prevent you from registering. DKMS America, which the Save Giovanni's Friends organization is affiliated with, has a good list of the eligibility requirements. "As far as I'm concerned, if you have the opportunity to save a life, you have to do it," says Guglielmo. "We're trying to fill the bone marrow registry so that no parent has to go through this."

With friends like Cindy Crawford helping DKMS Americas (Giovanni recently rubbed shoulders with the supermodel at a gala), the movement is fast on its way to the 100,000 registered donor goal.

For more information on Giovanni, you can go to the Save Giovanni's Friends page.