If you saw Ezra Fineman, who is about to turn three-years-old next week, you’d think he was a happy, healthy toddler. But, according to his mom, Robin, his young life is anything but normal.
At about five months old, Ezra was diagnosed with Hyper IgM Syndrome. The disorder makes Ezra unable to produce enough of his own infection-fighting antibodies, so it is difficult for him to fight off illnesses. According to Robin, he doesn’t go to preschool, and “rarely” plays with other kids. “If he does, we need to make sure none of them are sick.” Ezra and his parents avoid crowded public places, and take “extreme” safety measures if they need to be in a public place. He checks into the hospital at least once a month for regular treatments. His family must also “take precautions” with everything the toddler comes in contact with. “The produce he eats must be cleaned a certain way, and his water must be filtered a certain way,” Robin explained.
The only cure for Hyper IgM Syndrome is a stem cell transplant, and “doctors have recommended we do it as soon as possible,” Robin said. The problem is that neither of Ezra’s parents, nor any other member of his family, can donate bone marrow to him. None of them are an exact match.
The Fineman family connected with ‘Gift of Life,’ a public bone marrow registry that helps find people matching donors for bone marrow transplants. According to Ruth Miller, the Northeast Recruitment Coordinator for Gift of Life, “finding a match for a bone marrow transplant is much, much more difficult than a blood-type match for a blood donation.”
On Wednesday, March 7, Mahwah’s Temple Beth Haverim Shir Shalom is hosting a bone marrow drive to try to help Ezra. “Basically, you just take four Q-tips, and swab your cheeks,” Miller said. “It is tested to see what type you are, and you are entered into the public registry. If a patient in need matches your type, you are called and asked to donate.”
In Ezra’s case, Gift of Life is hoping to get members of the Jewish community and people of Polish or Hungarian decent to swab, because there is a higher chance that he will have a match amongst members of his same background. “But it is a public registry and we encourage everyone to get swabbed,” Miller said. “Ezra is one of thousands looking for matches, so if it doesn’t match him, it may match someone else in the registry.”
For Ezra and his parents, who live in Fair Lawn, getting people swabbed is only half the battle. It costs $54 for each swab kit to be tested to see if it matches, but people can be swabbed for free. According to Miller, GoL currently has 10,000 kits on hold because of a lack of donations.
“That is a feeling that no one should have to experience,” Robin Fineman said. “Knowing that your exact match that you’ve been waiting for is sitting right there, but you don’t know it because there’s not enough money to pay for the kit’s processing.”
Because of the need for funding, Beth Haverim will also be collection monetary donations from swabbers and non-swabbers alike. “Ezra’s match might literally already be sitting there, but it boils down to money,” Robin said. “Donations would be more of a help than I can say.”
According to Miller, once Ezra finds a preliminary match, more tests must be done on the person to make sure he or she is an exact match, and the “long” transplant and recovery process would need to take place. Though she said combating the disease will not be easy, he cannot do it without first finding a match.
According to Miller, donating to an exact match can be one of the most rewarding and "inspirational" experiences of a person's life.
"Members of the Beth Haverim Temple reached out to me when they heard about Ezra’s story, they wanted to help,” Miller said. “So, they set up the drive, and it just so happens that the next day is Ezra’s third birthday. You never know if you’re going to find a match, but that would be quite the birthday present for this young man."