When Michael Guglielmo received the news his 6-week-old son, Giovanni, had a rare, life-threatening chromosomal disorder in August 2006, he was devastated.
"I was scared," said Guglielmo. "There were so many emotions, but I was also determined to save him. I shed my tears, and then I said, 'Now we've got to change this. Now we've got to fix this.'"
Giovanni was diagnosed with Nuclear Factor Kappa B Essential Modulator - known as NEMO. Doctors told his parents without a bone marrow transplant, he would die within a year. The odds of finding a match are one in 20,000.
Motivated by the fear he would lose his son, Guglielmo started a bone marrow drive with an ambitious goal: he would add 20,000 donors to the national registry.
Within three months a cord blood donor was matched with Giovanni, but Guglielmo didn't abandon his goal. In fact, he increased his goal to 100,000.
On Oct. 15, Giovanni's Team will hold its second bone marrow drive at UNH. The drive will take place from 1:00 to 6:00 p.m. in MUB 334.
"I had started this movement, and I felt it would be socially irresponsible to walk away from it," Guglielmo said.
A year and a half past transplant, Giovanni is doing well. "He's starting to be a baby. He's playing with his brothers," Guglielmo said. "He's living as a baby, instead of living as a sick child struggling to live."
Today, Guglielmo is the executive consultant of DKMS Americas, the organizer of the largest bone marrow drive in history. So far 17,961 donors have been added to the registry.
Despite the overwhelming number of potential donors, "Six-thousand people every day [are] looking for a transplant," Guglielmo said. "Only two out of 10 find one."
UNH students Sarah Leonard and Lynette Boutin, both juniors and co-creators of Giovanni's Team, joined Guglielmo's efforts in April when they held a bone marrow drive. Eighty-two donors - four times the national average - volunteered their DNA.
"It only takes 15 minutes, [and] it does not hurt," said Boutin. "All it requires is a cotton swab and paperwork."
The process of collecting a sample involves swabbing the insides of a donor's cheeks, and doesn't require penetrating skin or bone. The DNA is then sent to the registry, which matches patients with potential donors.
"What we're learning now is that there's a 5 percent chance that you'll be a match in 10 years," Guglielmo said.
Matches are based on ethnic background, and the donor has to match on five out of six criteria. An ideal donor is between the ages of 18 and 30.
Guglielmo said it's imperative people are educated about the process.
"For the longest time, most people have been afraid of doing this because they believed it hurt," Leonard said. "Today, it is virtually painless. The small amount of pain you receive is minimal to the impact it is having on someone's life." Eighty percent of bone marrow extractions come from the pelvis, according to Guglielmo, while the remaining 20 percent come from the arm, where stem cells are taken from the blood. "Just ask yourself: 'If you could save a life and it didn't harm you, would you do it?'" said Guglielmo. "If your answer is no, you have a moral dilemma."
Volunteer Kendra Aronson, a junior at UNH, agreed. "Many people… benefit from these drives," said Aronson. "Not only will the bone marrow registry become larger, but it will also give the people in need of a bone marrow transplant a chance to live. Along with this, it benefits the person who signs up. They will feel as if they are making a real difference in someone's life."
Leonard said the group is aiming to draw 100 people to this year's event, which surpass last year's mark of 82, four times the national average, according to Guglielmo.
"We know it is a very high goal, but with the proper education, there shouldn't be a reason why people would not come," said Leonard.
"I want all students to join what I call the 'life lottery'-if you win, you could save a life," said Guglielmo. "Everyone I know that's been a match so far has said it's been a blessing."
More information can be found at helpgiovanniguglielmo.org. Also, free mail-in, self-test bone marrow kits can be obtained through www.SheKnows.com. Once the kits are resubmitted, the donor's name is added to the national registry.
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