With the holiday season in the rearview mirror, many promises and deep thoughts slip away into memory. People fall into their routines and take life for granted. Some of us, however, like Robin Fineman, remember to appreciate every little thing life has to offer.
Robin is the mother of Ezra Fineman. Six years ago, when Ezra was five months old, Robin, along with her husband, Evan, learned their son had Hyper IgM Syndrome. His body was unable to make antibodies needed to protect him. For the past six years, Ezra has gone through a number of medical procedures including two bone marrow transplants. The second transplant worked. “He is doing very well and is building up a new immune system,” said Robin. Now Ezra is like a newborn baby, in that he is just getting out into the world and building up his immune system, even receiving his childhood vaccines.
Today, Ezra is in school. No big deal—right? After all, a six-and-a-half-year-old should be in school! Well, prior to this school year, Ezra was homeschooled. Sending Ezra to school is both comforting and nerve-wracking for the Finemans. “For us—every little thing is like a miracle,” Robin says, “We’re still nervous about health, and there are some concerns with infection.” While at school, Ezra needs to take extra precautions such as hand washing and using Purell throughout the day.
Recently, Robin attended Ezra’s class. “I was the mystery reader in his class. It was so wonderful to be able to look out and see Ezra be in the presence of all the kids. He was just one of many.” This situation, which most parents take for granted, was unheard of for Ezra in the past. He spent all his time in the presence of adults, primarily his parents and healthcare providers.
The going out into the world, or de-isolation phase, has been a challenge for Ezra as well as his parents. Things that other kids are used to—playdates, birthday parties, etc.—are new to Ezra. Robin said, “He’s making great strides. He’ll tell us (her and Evan) what he is comfortable with and what he is not.”
“When Ezra went up with Evan for psicha on Yom Kippur, I had tears in my eyes,” said Arnie Spier, a member of Congregation Ahavat Achim in Fair Lawn. It was the first time Ezra was able to attend shul and his presence was noted by many.
The Gift of Life Foundation and Team Ezra
Spier heads up Team Ezra which will be part of a 5K walk/run in Saddle River Park in Paramus, NJ, on October 25 to raise money for Gift of Life. Spier, who went through his own cancer scare 14 years ago, said of Team Ezra, “We know whatever we raise is for a good cause and a great organization. The money can save lives.” Freund noted that 100 percent of net proceeds goes to process donor test kits.
The Gift of Life Foundation “helps children and adults who have lymphoma, leukemia or other cancers and genetic disorders find matching donors for blood and marrow transplants,” said Public Affairs Manager Marti Freund. The Foundation swabs people’s cheek to collect DNA and adds it to an international registry. The fee for the process is $60, but the Gift of Life does not charge people for swabbing.
The Gift of Life Foundation has supported the Fineman family throughout Ezra’s battle. “They have been by our sides the whole time and continue to be part of our lives,” says Robin. The Finemans have reciprocated by raising approximately $300,000 for Gift of Life to pay for the swabbing process. Through Ezra’s Gift of Life donor circle, matches have been found for 218 patients and 24 transplants have gone through with donors.
Unlike past years, the plan is for Ezra to participate in the walk. Planning long term is another one of those things that is new to the Fineman family. “I didn’t allow myself to think long term for a while. I had to learn not to think ahead. I only thought day to day,” said Robin. For Robin, it is important that Ezra understand what it means to give to others and recognize all that everyone did for him. No, he doesn’t remember everything that happened to him, but Ezra does know it’s his team. He knows that he will be amongst many people and be part of the action.
Robin knows that her son received the Gift of Life. And for that, she will always be appreciative.
To join Team Ezra or to donate, go to: http://support.giftoflife.org/goto/teamezra2015.
Larry is a freelance writer and educator. Check out his website at http://larrydbernstein.com/.
By Larry Bernstein
