While in New Jersey last week, I was asked by an organization called Gift of Life to meet a 2-year-old boy named Ezra who lived nearby.
Ezra has a primary immune deficiency as the result of a spontaneous genetic mutation. Life without a functioning immune system is indescribable. He needs a functioning immune system and he could have one if a matching donor gives him stem cells. The best matches for Ashkenazi Jews is within the Ashkenazi population. Ezra is of Polish and Hungarian descent, and so am I.
I spent just under two hours with Ezra and his mother, learning about their journey from ecstatic first-time parents to full-time monitors of germs and bacteria, not knowing if simple viruses that my children fight dozens of times will end the life of their beloved son. I was asked to allow myself to be filmed during this visit so that Gift of Life can use the footage to raise awareness about the importance of registering as a donor.
Here’s what I learned:
1) Getting registered is easy. It involves swiping the insides of your cheeks with a long-handled cotton swab and mailing it in an envelope. Register here.
2) Donating is easy. Eighty-percent of the time that you are a match for someone, you can donate stem cells from the blood in your arms, just like giving blood.
3) Even if you are not a match for Ezra, you may be a match for someone else. Ezra’s family tries to get anyone they can registered as a donor. Two people that registered through Ezra’s campaign have preliminarily matched two patients searching for a transplant. If these preliminary matches are confirmed, that’s two lives saved through Ezra’s family’s efforts. Check out Ezra’s Page.
4) There is a tremendous need for registered donors from the Ashkenazi population.
5) Donations are needed to fund the processing of people’s cheek swab kits that they mail in. There are kits literally sitting in boxes in the Gift of Life offices waiting to be processed! Donating $54 (with or without participating in the swabbing yourself) processes one swabbing kit. Donate here.
One of the amazing things I learned from Ezra’s mom is that she was committed to continuing to breastfeed Ezra after he was first diagnosed; providing him with the important nutrients and immunity found in breastmilk to help keep him strong. I don’t say that I admire Ezra’s mother and feel inspired by her simply because I am a lactation educator and counselor, a La Leche League member, and the mother of children who nursed well into toddlerhood.
I say this because it was this aspect of this family’s journey that has sent chills down my spine again and again since I met with them; the image of a woman–a successful lawyer, a new mother; a young Jewish woman who was told out of the blue that she might lose her son forever any time he gets sick; this mother poured her love into her child tirelessly and heroically, because it was the only thing left for her to do.
If I could do something to show that woman that I stand with her as a mother, why wouldn’t I?
So here’s the final thing I learned from my day with the Gift of Life people and Ezra:
6) If I had the power to save a life, I would. I would do it in a heartbeat. And I hope God gives me that chance if that’s what I am here to do.
“He who saves one life, it is as if he has saved the entire world.”