Robin and Evan Fineman were living in a New Jersey suburb, when Ezra, their adorable five month-old son with twinkly eyes and a beautiful smile came down with a severe pneumonia. During his 15-day hospitalization, the doctors realized that Ezra’s immune system was compromised. After he recovered, Robin and Evan took Ezra to an immunologist for further testing and he was soon diagnosed with a rare primary immune deficiency called Hyper IgM Syndrome. Affecting only one in every one to two million people, the syndrome keeps his body from producing antibodies, leaving him with a heightened susceptibility to infection. The only cure for Ezra is a stem cell or bone marrow transplant.
Ezra, now two years old, is doing well with medical treatments. Every four weeks, Immunoglobulin is delivered to his system through an IV for several hours, and he takes prophylactic antibiotics regularly. While the family must take precautions, Robin says, “Ezra doesn’t live in a bubble.” They wipe down the swing at the park, avoid going places if they know someone is sick, and wash everyone’s hands often. But for a cure, Ezra needs a donor who is a perfect match for him. And finding that match is a monumental task.
In October of 2010, Robin and Evan got in touch with the Gift of Life Bone Marrow Foundation, an organization that maintains a bone marrow registry and recruits potential donors at drives and through its website. Gift of Life currently maintains a registry of approximately 180,000 donors. Every week, Gift of Life, along with the other accredited registries, provide their data to a worldwide donor network. According to Shayne Pilpel, a recruitment coordinator at Gift of Life, who is working very closely on Ezra’s case, statistically, “For every 1,000 people who are tested there is a potential to find one donor.” Testing now consists of a simple cheek swab. Gift of Life and its volunteers set up recruitment drives all over the country, but you can order a test kit on their website as well.
Based on Ezra’s tissue typing, the Finemans are targeting those of Eastern European ancestry, and in particular, Polish and Hungarian ancestry. But donors of all backgrounds are encouraged to join the registry because Ezra’s or another patient’s match may be found anywhere.
Organizing donor drives requires raising the money to pay for the testing. It costs $54 to process one cheek swab kit. Gift of Life also currently has a wait list of almost 11,000 potential donors. These are people who have been swabbed and want to be donors, but there is no money to process the kits and add these donors to the registry. There are countless lives that could be saved if these kits are processed.
While no one wants to find a match for Ezra more than his parents, it hasn’t stopped Robin and Evan from thinking of others. “My son’s life is not more important than someone else’s life,” Robin says. “Ezra is not the only one waiting for a donor.” People have come to donor drives for Ezra, but then request not to be put in the national registry. The Finemans were not comfortable doing that and said thank you anyway. Pilpel said, “Robin and Evan are really good people who are thinking beyond themselves. With all their hard work, I owe it to them to make myself available whenever they need me. ”
Please go to https://www.giftoflife.org/dc/Help4Ezra/blog.aspx where you can order a cheek swab kit and register to be a donor, make donations and become a member of Ezra's Donor Circle. Contact Help4Ezra@gmail.com, if you have any questions. You can be Ezra’s miracle - giving him health and life, and allowing him to share his smile with the world for a long, long, time.
Visit Ezra's facebook page at http://www.facebook.com/pages/