Two-and-a-half-year-old Ezra Fineman loves the alphabet and his tricycle.
He also desperately needs a bone marrow transplant.
Reconciling the two realities is not an easy thing for his mother.
Sadly, said Fair Lawn resident Robin Fineman, the Gift of Life Bone Marrow Foundation – with whom she has been working closely – has 14,000 cheek swabs from potential donors sitting on a wait list, “but there’s no money to process them. I was devastated when I found out. If this is the most likely [place] to find a match, Ezra’s may be sitting in a box.”
Fineman said it costs $54 to process one kit. Through her son’s website in the Donor’s Circle section of Gift of Life, the family has raised some $110,000 – which, she said, will pay for more than 2,000 test kits to be processed. Money has also been raised through appeals on Facebook and other social media.
“The last thing you need is a patient in urgent need and a donor sitting on a wait list,” said Fineman. “Fortunately, we’ve had time to do this campaign because Ezra has been stable.”
The youngster, she said, undergoes monthly hospital treatments – not an easy process for a toddler. While he has managed to ward off most infections, “Serious complications can develop – “liver complications, respiratory ailments, lymphoma. It can happen tomorrow, or when he’s 50.”
“Thankfully, he has been fairly healthy, although he had a rough spring and summer with frequent infections,” she said. “Every time he gets a low-grade fever, we go to the hospital to get IV antibiotics. It’s hard to keep him in a hospital room. He can’t go to the playroom, so we bring a lot of toys, DVDs, and videos.”
Fineman said that in her experience, most people, once educated on the subject, are willing to help. Indeed, she said, “The vast majority who have supported us by joining the registry or making donations are complete strangers.”
She noted that since tissue type is inherited, Ezra’s best chance is a genetically matched donor of Eastern European ancestry.
While she has been urging both Jews and non-Jews to consider becoming bone marrow donors, she has focused her campaign on Gift of Life – a public bone marrow, blood stem cell, and umbilical cord blood registry based in Boca Raton. According to its website, Gift of Life facilitates transplants for children and adults suffering from such life-threatening illnesses as leukemia, lymphoma, other cancers, and genetic diseases.
“They have more Jews than other registries in the United States,” she said.
A spokesman from the group said that while many thousands of donors do not identify their ethnic background, some 115,114 people in the registry have identified themselves as Jewish. Of this group, there are 3,300 active donors from Bergen County.
“I view joining the registry as an investment in the Jewish community,” said Fineman. “We want to ensure that there are as many potential matches out there as possible, even if there’s not an immediate need. It’s in everyone’s interest to make sure Jews are represented in the registry [so that] Jews have as much chance of finding a match as people of other backgrounds.”
She noted that Gift of Life founder Jay Feinberg has suggested that Jews may have a harder time finding matches, due to the destruction of bloodlines during the Holocaust.
“Maybe there were huge families that were left with one survivor,” she said. “Those lines were destroyed. I think that’s applicable in Ezra’s case.”
Another problem is that Ezra has “a chromosomal crossover in the gene controlling for HLA tissue typing. That contributes to our difficulty in finding a match in the registry.”
Still, she said, “There’s more of a chance to find a match in the same ethnic group, so we’re focusing on the Jewish population.”
Fineman said that on Sunday, the community’s Mitzvah Day, she will do her first drive with the Paramus-based Community Blood Services. The group’s HLA Registry helps people find unrelated, compatible donors for bone marrow and stem cell transplants. According to its website, it has registered more than 230,000 potential donors and has facilitated more than 1,000 bone marrow and stem cell transplants.
Sunday’s bone marrow drive will be held at Temple Israel and Jewish Community Center in Ridgewood. The synagogue was already planning a blood drive for that day, said Fineman, and Alice Blass, Jewish Federation of Northern New Jersey’s Mitzvah Day coordinator, suggested incorporating a drive for bone marrow donors.
Some 350 people have registered to become donors at the Bergen County drives that were held for Ezra in the past, said Fineman.
There are many ways to help Ezra, she said. In addition to attending the upcoming drive, people can visit his website, www.giftoflife.org/help4ezra, where they can order cheek swab kits and make financial donations to help pay for the processing of kits on the wait list.
For further information, visit Ezra’s Facebook page by searching “Help4Ezra” at www.facebook.com.