|Ezra Fineman enjoys the swing set his parents bought him after a hospital stay.|
Last May, 4-year-old Ezra Fineman had a stem cell transplant.
Now, once again – still – the family is searching for a match.
Diagnosed with the primary immune deficiency Hyper-IgM Syndrome when he was 5 months old, Ezra does not have the ability to fight off infection, his mother, Robin Fineman, said. When it is faced with a virus or bacteria, Ezra’s body cannot create antibodies.
While Robin and Evan Fineman have been searching for a bone marrow donor for Ezra since 2010, they have not yet found a match.
“We ended up proceeding with a stem cell transplant last May,” Fineman said. Since no match had yet been found – and time was of the essence – the procedure employed cells from an umbilical cord blood unit, an alternate source of stem cells.
“It was a mismatch,” said Fineman. “The transplant failed. He had high-dose chemotherapy and three months of isolation in the hospital. But he never had higher than 20 percent of the donor cells, and that slowly faded away as the months went by.
“The prognosis is not good for this disease,” she said, noting that his doctor felt that “we shouldn’t wait around because it’s not clear that a matching donor will show up.”
“The good news,” she added, “is that Ezra is doing well. The old cells grew back. He’s basically the same as he was before the transplant.”
Ezra is a wonderful patient, Fineman said.
“He’s been incredible. One of our big worries was what [the transplant] would do to his psyche. But he’s very resilient. He never once asked to leave the hospital room. He understood he had to go through it. He’s a complete trooper – unbelievable.”
While Ezra is not allowed to go to school, he recently began in-home preschool instruction with a teacher sent by the local school district. In addition, his parents bought him a swing set after he left the hospital.
“Ezra loves space shuttles,” his mother said. “Anything to do with space.”
Fineman, an attorney who has been on a leave of absence since last April, said that well-wishers have reached out to NASA on Ezra’s behalf. The space organization, in turn, has sent the boy posters and other gifts as well as messages of encouragement from astronauts.
The child also loves volcanoes, and he and his parents have built several, using baking soda to make them “erupt.”
“We’ve done everything we can to find a match,” Fineman said. “More than 5,500 people are registered on his [Gift of Life Bone Marrow Foundation] donor circle.”
The family also has held bone marrow drives in Poland through a Polish bone marrow registry. Fineman said that when Gift of Life founder Jay Feinberg examined worldwide registries looking at tissue typing, it appeared that more people in Poland had the kind of antigens matching Ezra’s tissue typing then were found elsewhere. Since tissue typing is inherited, it is believed that people are more likely to find a match among those of similar ethnicity.
“There aren’t that many Jews left in Poland, so it was a little surprising,” Fineman said. “The [Polish] registry was wonderful. They asked for the names of the towns and the areas in Poland where our family was from and went there and had drives. They had a drive in the Jewish community of Warsaw and the chief rabbi of Poland contacted us.
“I saved the voice mail,” she continued. “It was during the drive and he said they had 50 people there already – young people coming out to help. It was so heartwarming.
“It gave me chills to think about what this community had been through and now they’re trying to save my son. It’s incredible.”
Fineman said that so far 90 matches have been found for other patients through Ezra’s circle.
“That’s always comforted us,” she said. “It’s made us think that – if anything – we’re going through this to help others.”
A survivor’s legacy
The Gift of Life Bone Marrow Foundation was created by transplant survivor Jay Feinberg, said Ruth Miller, the organization’s special projects coordinator.
At the age of 22, on track to attend law school, Feinberg was diagnosed with leukemia. While his two brothers were perfect bone marrow matches for each other, neither matched Jay. Neither did anyone else in his family, so he turned, without success, to a public bone marrow registry.
While a person has a greater chance to find a match with someone in his or her own ethnic group, “in 1991 there was a less than 5 percent chance of an Ashkenazic person finding a match,” Miller said. Today, thanks to increased awareness and the greater number of people signing up for such registries, that figure has risen to 70 percent.
“But it’s not 100 percent, and the number is less than half of that in the Sephardic community,” she said.
Unable to find a match, Feinberg’s family and friends began a “Friends of Jay” movement to educate people and get them tested.
“They didn’t take no for an answer,” she said. Four years later, with 60,000 people tested and no match found, a friend decided to hold one last drive in Milwaukee. “The last person tested – literally – turned out to be his match,” she said, adding that “Jay vowed if he survived the transplant, this would be his mission in life.”
Survive he did, recently celebrating the 18th anniversary of his transplant. Today, Feinberg, founder and CEO of Gift of Life, heads an organization that has facilitated more than 2,500 transplants worldwide.
Through its international registry, the foundation helps children and adults suffering from leukemia, lymphoma, other cancers, and genetic disorders find matching donors for blood stem cell and bone marrow transplants. Potential donors join the registry with a simple cheek swab. Each swab kit incurs a $60 lab processing fee.
Miller said that 80 percent of donors donate peripheral blood rather than marrow. Stem cells are harvested from a donor’s blood from his or her arm following a course of injections. Only 20 percent have bone marrow drawn from the iliac bone.
She noted that the Finemans’ efforts to publicize their son’s plight have been helpful to the organization, “spreading the word in terms of people getting swabbed and raising funds to help offset the cost of processing the swabs.” In addition, they have found 90 matches for other patients, resulting in 11 transplants.
Miller said that while swabs may be done on people between the ages of 18 and 60, 90 percent of those actually called for donations are under the age of 45.
“We know that transplant centers around the world want younger, healthier donors,” she said. “Patients have better outcomes when donors are younger.” As a result, Gift of Life is now running drives on college campuses and among staff members at camp.
“In 2011 we swabbed at Young Judea in New Hampshire,” said Miller. “A 20-year-old staff member became a donor in 2012. Inspired by the experience, he went back to college and swabbed 550 fellow students.”
Meanwhile, people are reaching out in all kinds of ways to help Ezra.
“We’ve really seen people come through,” Fineman said, expressing gratitude to all those who have attempted to help her son and her family. “Ezra has received presents from complete strangers. They’ve sent meals. There are moments when people really care. We’ve been the recipients of that.”
Celebrities are lending a hand as well. On May 19, singer, songwriter, and children’s book author Peter Yarrow (formerly of the singing group Peter, Paul, and Mary) will perform a benefit concert on behalf of Ezra and others in the same situation. Material publicizing the concert notes Yarrow’s desire “to help to bring awareness to the importance of becoming a bone marrow donor and supporting the ongoing testing efforts of potential donors.”
“My parents are big Peter, Paul, and Mary fans,” Fineman said. “They used to take me to concerts when I was young. They went to a book signing in Maplewood for [Yarrow’s] children’s book based on the song ‘I’m in love with a big blue frog.'”
“Not only are they fans, but they made Ezra into a big fan,” she continued. “Since he was a baby, we’ve been singing ‘Puff the Magic Dragon’ to him and he loves it. It became the song we had to sing when rocking him to sleep. If we dared to sing something else, we got a bit of a nudge. In the hospital, he made the music therapist play ‘Puff.'” Ezra also has all of Yarrow’s children’s books.
At the signing, Ezra’s grandparents, Karen and Mark Lefkowitz, told Yarrow about Ezra. The singer asked them to wait there until he was finished signing books. Later, Yarrow volunteered to hold a benefit concert for Ezra, from which all proceeds will go to the Gift of Life Foundation to help pay for the cost of processing donor test kits to help find a match for Ezra and other patients in need.
The concert, beginning at 1 p.m., will take place at the Highline Ballroom, 431 West 16th St., in Manhattan. The ballroom is donating the facility for the event. To buy tickets, go to www.giftoflife.org/peteryarrow.
Fineman noted that people will be able to swab their cheeks and register as bone marrow donors at the concert.
“We are very grateful to Peter Yarrow and the Highline Ballroom for making this event possible,” she said, adding that “if a good match shows up, we will transplant Ezra again.”
For more information about Gift of Life, go to www.giftoflife.org, which lists upcoming drives and donation opportunities. Potential donors can also order swabbing kits online. In addition, Miller said, the organization is always looking for volunteers to help run the drives.
To link to Ezra’s donor circle, either to register or to make a donation, go to www.giftoflife.org/help4ezra.