Fair Lawn, New Jersey’s Ezra Fineman is looking for his perfect match. He is smart, has brown hair, and a great smile. Ezra is also two years old and is looking for a bone marrow donor. After contracting a severe case of pneumonia at five months old, Ezra was diagnosed with Hyper IgM syndrome, a rare primary immune deficiency. Affecting only one in every one-two million people, the syndrome keeps his body from producing antibodies, leaving him with a heightened susceptibility to infection. While Ezra still runs and plays like other toddlers, he must get IV Immunoglobulin treatments every few weeks, take prophylactic antibiotics, and use extra caution against germs in public places. Despite these treatments and precautions, serious complications still arise. The only cure for Ezra is a stem cell or bone marrow transplant.
Robin and Evan Fineman, Ezra’s parents, have been working with the bone marrow registry, Gift of Life, since October 2010 in their quest to find Ezra’s bone marrow donor. Gift of Life, headquartered in Boca Raton, Florida, is headed by founder Jay Feinberg, who recently celebrated the 16th anniversary of his own bone marrow transplant. Gift of Life focuses on patients in the Jewish community, as it would be more likely for them to find a match within the Jewish population. The search for Ezra’s match has gone global, with donor drives being held across the United States from Phoenix to New York, as well as Bialystok and Warsaw in Poland. The cost to process each potential donor’s sample, taken by a simple swab of the cheek, is $54. While each potential donor is encouraged to fund their own test, many people can’t afford to, and over 13,000 samples are still waiting to be tested due to lack of funding. While financial donations to Gift of Life are encouraged, the Finemans – who have raised over $100,000 for testing – are also trying to target their drives as much as possible to increase the chance of finding Ezra’s match.
Feinberg has personally been analyzing test results to see if they are on the right track. “Ezra’s DNA has an anomaly, a rare genetic crossover, that is making his search especially challenging,” says Feinberg. His antigens or markers are matching most closely with people of Eastern European descent, particularly those of Polish and Hungarian ancestry. “Robin has been working with a genealogist to discover Ezra’s ancestors’ cities of origin. The Holocaust has a huge impact until this very day on patients like Ezra. We are missing all of the bloodlines of people that would have been here today to donate,” explains Feinberg.
“It was amazing that over 200 people showed up for the drive in Bialystok,” Robin said. “With the language barrier, we weren’t even sure it was going to happen.” The Finemans, while still waiting for Ezra’s donor, are thrilled that nine potential donors for other patients have been found, and that one transplant has been performed so far through efforts on Ezra’s behalf.
Joining the bone marrow registry and donating is actually easier today than when Jay Feinberg was looking for his perfect match. For more information about having a drive in your area, contact Robin Fineman at [email protected], or go to www.giftoflife.org/help4ezra, to order or sponsor a test kit. You can also visit Help4Ezra on Facebook. The actual donation procedure is much less invasive than it used to be.
Feinberg stresses the importance of all eligible participants joining the registry. “People ask, ‘what are the chances that I’ll be a match?’ but that can’t be further from the truth. They can be the one.” Feinberg should know, as 50,000 people were tested during his search for a donor. His perfect match was the 50,000th person to register at the very last drive to be held on his behalf.
