Paramus/Fair Lawn–Imagine finding out that a close friend has been diagnosed with a potentially fatal illness. Then the doctors say there is a treatment available, but unfortunately the treatment cannot be performed due to lack of resources. This was the case for Robin and Evan Fineman of Fair Lawn. When their son Ezra was 5 months old they were told he had Hyper IgM Syndrome. His body lacked the ability to make antibodies needed to protect him from everything around him. His only hope for treatment was a bone marrow transplant. With no family members who matched his blood type and other factors, the Finemans turned to a public search through the available national and global bone marrow registries, including Gift of Life. But even in their large databases, there was no match for Ezra.
After numerous donor drives, many thousands of dollars raised, and two transplants later, Ezra is on the slow road to recovery. He is still immuno-compromised and unable to socialize in large groups, but his family remains hopeful. “We hope he will grow a healthier immune system,” Robin Fineman said. Fineman said she was shocked to learn that even though many people may provide samples, their samples will sit in storage until organizations have the funds to test them. “The thought that Ezra’s match could have been out there but was locked away in storage was hard to process,” exclaimed Fineman.
When the Finemans heard that Gift of Life organized a fundraising walk, specifically to raise funds for donor testing, they decided to participate. “No one should have to go through the experience of not having a match for a loved one,” explained Fineman. Once Robin and Evan decided to walk as part of Team Ezra, many of their friends, family, and fellow congregants joined the fundraising and walking efforts with them. “Even though so much of the future remains unknown, coming to the walk and feeling part of something celebratory allowed us to acknowledge how far we have come,” expressed Fineman.
“From the time Ezra was first diagnosed, we tried to support the Fineman family in any way we can,” said Rabbi Uri Goldstein, Rav of Ahavat Achim in Fair Lawn where the Finemans daven. In fact, the first drive run for Ezra was coordinated and hosted by Ahavat Achim. “Of course we provided the usual assistance: meals, tehillim, donor drives. But doing the Walk for Life really allowed us to support the Fineman Family.” Team Ezra raised over $28,000 this year– over half of the goal of the entire Walk for Life–to help fund future testing. Over 125 people came out to walk as part of Team Ezra–easily identifiable by their purple T-shirts. “People in our community are really part of our family,” explained Goldstein. “Robin and Evan’s strength inspires us to gather together and support them.”
Recruiting people to walk and getting sponsorship was easy to coordinate, according to Arnie Spier, a friend of the Finemans and co-captain of Team Ezra. “We sent out a few e-mails, updated our Facebook page, and the love came pouring in for Ezra and his parents,” Spier said.
While most people remain in the registry without ever getting called to be a donor, if someone does get a phone call, they may be the only person in the entire world matching a patient. For Jordan Silvestri of Bergenfield, the call came while he was in his car driving to work.
Like many people in the Gift of Life registry, he was tested with a cheek swab–not even a blood test–during his year in Israel. Gift of Life came to run a drive, and a bunch of friends went to get tested so he went along and got swabbed as well.
Gift of Life’s phone call came at a significant time in Silvestri’s personal life. A close friend had recently been diagnosed with non-Hodgkins lymphoma and the patient Silvestri matched, and eventually donated to, was battling the same illness. Silvestri was inspired by his friend, and saw the struggles he overcame. “If I could do this for my friend, I would have donated in a second. Let me do this for someone I may never know, but can somehow help,” Silvestri said.
“The irony of the situation is that I had spent so much time actually avoiding doctors,” laughed Silvestri. “Now all of a sudden, I am traveling to Mount Sinai for full work-ups, my Grey’s Anatomy moment in an operating room, and the full doctor experience.” Silvestri did the Walk for Life in 2013 with his family as well, just a few months after donating bone marrow.
Bone marrow recipients and their donors are not allowed to meet for a certain amount of time following the transplants, though they are allowed to correspond through the Gift of Life. Silvestri was happy to hear that each subsequent update was positive, and as of the most recent correspondence, his recipient was able to return to work part time.
No Gift of Life event would be complete without the emotional introduction of a recipient to his or her donor, and this Walk for Life was no exception. Gary Docks of Ohio traveled all the way to Paramus to meet his donor, Jordan Davis of Englewood. The emotions ran deep and affected all who witnessed it. Docks joked about his “newly inherited allergy to dogs and cats,” but could not express how “eternally grateful” he will be to Jordan. Docks referred to Jordan as his hero, but Davis brushed the praise aside, saying the process was “fairly easy,” and he did not consider himself a hero. They both feel a special bond with each other, which started even before they met, that was forged through their unique experience.
Gift of Life was started by Jay Feinberg, originally from New Jersey, and a transplant recipient himself. Feinberg was diagnosed with leukemia and spent four years searching for a match. Because bone-marrow type is based on genetic background, Jewish patients and other racial and ethnic minorities often have a harder time finding a bone marrow match.
With aggressive fundraising and donor recruitment efforts, Feinberg has grown the registry to over 234,000 registered donors. At this point, that allows for an almost 75% match rate when patients search for a match. Many people who have worked with Gift of Life had the opportunity to meet Feinberg’s mother, Arlene, who passed away in early 2014. Gift of Life Bone Marrow Foundation grew out of her refusal to stop searching for a match for her son.
Feinberg felt that the best tribute to his mother, known as the “founding mother” of Gift of Life, would be to increase the number of registered donors to more than 300,000 people. “It’s going to take time,” remarked Feinberg, “but I know we will get there.” The potential to match more patients will increase as well. “With 300,000 people in the registry, we may even be able to match as many as 85% of our patients,” Feinberg said. His mother would have liked nothing more than to know how many people continued to benefit from her efforts on Feinberg’s behalf.
Though the Feinmans, Jordan Silvestri, and Jay Feinberg all faced different roles in the bone marrow journey, they all know the same truth: that for a little bit of effort on the part of an individual, life-saving results can occur. Visit giftoflife.org for more information and to register. To follow Ezra’s progress, “Like” his page: www.facebook.com/help4ezra.
By Jenny Gans