Bone marrow donors solicited on Martha's Vineyard
Photo courtesy of Michael Guglielmo
This story was intended to alert Islanders about a sign-up event for donors for stem cell bone marrow transplants. The drive is scheduled for this Saturday, October 8, between 10 am and 4 pm at the Oak Bluffs Library.
But the story grew, and if you are moved by the triumph of human will over adversity and by the power of redemptive acts, read on.
The principal characters are Giovanni and Michael Guglielmo (son and father), Anna Hanchar, and Peter Harf. And nearly 500 Island residents and visitors to date who have been moved to sign up over the past five years as potential marrow donors, including one donor whose blood platelets matched those of a dying recipient and saved a life.
The donor drive is designed to build a database of potential donors to improve chances of finding matches between potential donors and people suffering from leukemia, blood cancers, and a variety of auto-immune diseases. Donated platelets literally become the recipient's blood marrow — their "new blood" — replacing diseased blood cells, enhancing recovery.
Giovanni Guglielmo is five years old. He lives in New Hampshire and has become the face of bone marrow transplants on the Island and worldwide. He suffered from a rare autoimmune condition that afflicts only 11 people in the U.S. and 62 people worldwide.
"He was diagnosed at Children's Hospital in 2007 Boston when he was six months old," recalled Michael Guglielmo, speaking Saturday from a donor drive in West Bridgewater. "They told us that he would die before his first birthday because only one person in 20,000 would provide a match and they didn't have 20,000 names.
"I said 'no problem, I'll get 20,000 names,'" Mr. Guglielmo recalled. And he did. And within Giovanni's six-month window of life, a match was found. He is free from the autoimmune condition that threatened his life, but the treatment has left him with weakened bones and, more recently, colitis.
Today there are 67,000 names in the DKMS Americas database, available to hospitals and doctors for matching with patients. DKMS is an acronym for Bone Marrow Donor Center in German. Mr. Guglielmo also learned that though the odds of matching are 1 in 20,000 worldwide, they are 1 in 600 in the northeast U.S. "We share so many common ethnicities and genetics in the Northeast that the odds are better for matches here," he said.
So far, due to the combined efforts of Mr. Guglielmo and Ms. Hanchar (a software exec during the day) and the network they've built, 101 donors have been found.
Mr. Guglielmo didn't stop, giving up his business to beat the donor drum full time. Along the way, DKMS Americas hired him as their Northeast director. DKMS Americas is the largest marrow donation organization in the world, formed in 1991 by Herr Haft in Germany to keep a promise to his dying wife. In 1990, when Mechtild Harf's leukemia was diagnosed, only 3,000 donor names worldwide were available to her.
"She asked him to help others, to give her death meaning," Ms. Hanchar said from her Lunenberg home last week. "DKMS in Germany was the first step in 1991, a year after Frau Harf died." Then DKMS Americas was founded seven years ago. Branches have also been formed in Poland and Spain with an Italian chapter in the works.
More than 2.9 million potential donors are in the worldwide database after 20 years of effort by Herr Haft and his daughter, Katharina, who are now based in New York, and by activists such as Mr. Guglielmo and Ms. Hanchar, who have personally enlisted 45,000 potential donors in four years.
"It's so simple a process," Ms. Hanchar said last week. "No one needs to die. Only four in ten victims receive a live-sustaining transplant. Seventy percent of patients must go outside their families to find a match.
"I got involved in 2007, got to know Giovanni and his family. I've been vacationing on the Island for years and I thought the Ag Fair would be a great donor site, and it was. A person who signed up at the Ag Fair two years ago became the Island's first donor. The response here is incredible: there isn't another place like it.
"You have to be 18 to 55 to be a donor but 16- and 17-year old Island kids come up to me repeatedly at the Ag Fair, wanting to sign up. I've done these (donor drives) all over the Northeast. You just don't get that in most places. These Island kids were frustrated because they couldn't participate. They wanted to help."
There is another element to Giovanni's story. "I was in prison for 17 years (on gun and drug charges)," Michael Guglielmo said. "I went in with a grade school education and came out with a master's degree. No one would hire me, so I did dead-end jobs and slowly built a construction business.
"Then this happened to Giovanni. People helped me, gave me jobs, paid my mortgage. This work has redeemed me. He is my redemption, my triumph over adversity." As a result of his successful donor work, DKMS Americas named him its Northeastern area director, a paid position. "I can support my family and do my life's work," Mr. Guglielmo said.
Ms. Hanchar describes her donor work as a simple equation: more donor sign-ups equals more donors equals more lives saved. "And the process is so simple," she said. "You swab your own cheeks twice and fill out an information sheet. That's it. We pay for the cost ($65) of the lab work, which defines your characteristics.
"If you're a match, you are contacted by the doctor or the medical center treating the patient you match. Then you decide whether to donate. The stories about how painful bone marrow donations are simply not true.
"It's not pain-free but it's not bad. It takes about four to six hours." Sluggishness and flu-like symptoms may occur for a few days to two weeks as the donor's body replaces its platelets. "But you've probably saved a life," Ms. Hanchar said.
Two-thirds of transplant recipients live extended lives and only one or two percent of recipient bodies reject the transplant.
Meanwhile, Giovanni has become the face of DKMS Americas' work in the Northeastern U.S. "This kid has no idea of the impact he's having on people's lives," Mr. Guglielmo said. "He's pretty sick right now, but I can't wait for the day when he's old enough to realize how much he's already done."
Bone Marrow Donor Drive, 10 am to 3:30 pm, Saturday, Oct. 8, Oak Bluffs Library. Add your name to the National Donor Registry. For more information, call 508-507-0580.