Eleven years ago, Judy Creed donated a kidney to her son, Jonah Selber. She puts it as casually and plainly as that.
Asked about her tone, she laughs. “It wasn’t” casual, she said.
Today, Selber, 46, who was born with cognitive disabilities but later developed kidney issues that have already required both his mother’s kidney and that of a deceased donor a few years before, now finds himself on a waiting list for another, preparing for dialysis.
“One of the biggest obstacles now is that I can’t reassure my son and say, ‘Don’t worry about it, hon, I’m gonna give you my kidney,’ so he’s terrified,” Creed said. “He’s terrified that he won’t get a good kidney.”
Creed, 76, is the founder of Judith Creed Horizons for Achieving Independence, known as JCHAI. Founded in 1987, JCHAI provides services and housing to adults with special needs who want to live as independently as they are able. Among other services, JCHAI provides one-on-one visitations from social workers and a supported apartment program in Bryn Mawr.
When Selber was born, Creed was told by a doctor that his impairments were so severe, she should “put him away,” she recalls the doctor saying.
“He’s going to ruin your life,” she was told. The doctor was correct that Selber’s life was going to be difficult — he didn’t walk until he was 6, and required multiple surgeries just to open his eyes — but the doctor didn’t count on Creed.
Creed, a trained speech pathologist, chose to take her son’s care into her own hands, providing him with opportunities for socialization rather than “put him away.” JCHAI’s creation came from a similar impulse. Today, Selber lives on his own, and is a 20-year employee at Thomas Jefferson University Hospital, working as an office assistant. He’s donated thousands of dollars to Jefferson, the Philadelphia nonprofit Adults with Developmental Disabilities and more. And yet, he now finds himself being prepped for dialysis, a fistula being bored into his arm to prepare for the debilitating ordeal.
“He doesn’t deserve all this pain in life,” Creed said. “He’s a very strong, good-natured person.”
“In general, the opportunities for recipients to look for living donors have increased but yet it is challenging,” said Dr. Karthik M. Ranganna, medical director of the Kidney Transplant Program at Drexel Nephrology. “There are organizations and institutions which have created programs like living donor champion programs wherein friends and family members of patients are trained as advocates for patients so that they can ask on patient’s behalf.”
No less difficult but perhaps more fraught with misinformation is the problem of bone marrow donation.
Zach and Rachel Gratz-Lazarus are dealing with those issues as they seek a donor for their daughter, Norah. Rachel Gratz-Lazarus is originally from Philadelphia, and the family lives in Alameda, Calif., where she works in public health and her husband works in a public defender’s office, assisting people with re-entry into society after incarceration.
“The purpose of our outreach is to highlight Norah’s story, but also to clear misconceptions about donating bone marrow,” Zach Gratz-Lazarus said. “It’s actually fairly simple to donate bone marrow.”
Norah, 5, was diagnosed with Fanconi Anemia (FA) last year; 90 percent of patients with FA develop leukemia or experience bone marrow failure. Presently, one of the only ways for Norah to fight the disease is with a bone marrow transplant. Norah’s symptoms thus far are manifested in progressive hearing loss, but for now, she’s still able to go to school, play with her friends and live a 5-year-old’s life.
Still, said Zach Gratz-Lazarus, “It’s been a complete emotional roller coaster.”
Contrary to popular representation, bone marrow transplants are fairly simple, he said. “An intense blood draw,” as he puts it, that leaves soreness for longer than that. The preferred age range is 18-45, he said, but that hasn’t stopped older would-be donors from reaching out to help.
“We get a lot of emails through this campaign from people who are 62-years-old and are just hand-wringing, in a very classic Jewish fashion, about their inability to sign up, y’know, ‘I’m healthy! I don’t understand!’”
“The community has been just off the charts amazing,” said Gilbert Martinez, Norah’s caseworker at Be the Match. Nearly 2,000 people have responded to Norah’s story by getting themselves swabbed since the campaign began in December.
Zach Gratz-Lazarus also credits Chai Lifeline, a national nonprofit assisting the families of children with serious diseases, for its assistance.
In the meantime, he and his wife are racing to find a genetic match for Norah, signing up friends, family, community members and complete strangers to swab their cheeks and see if they’re the one.
“It just becomes a numbers game,” Zach Gratz-Lazarus said. “It’s like a reverse lottery. My daughter has winning numbers, and the more tickets that people buy, aka swab, the more likely that someones numbers are going to match up.”
He stressed that though the likelihood of matching with an Ashkenazi Jew is higher for Norah, anyone could potentially be a match (even her brother, Ellis, 3, is not).
Norah isn’t yet at an age where she can understand the gravity of her situation, nor do her parents think that she needs to yet.
“We don’t want her to be overly burdened,” Zach Gratz-Lazarus said. Still, they want her to feel some sense of her role.
“Our goal,” he said, “is for her to have a sense of ownership over her own story and her own body, and that she knows how to take care of herself and be her own best advocate with all these medical professionals that will be in her life for the foreseeable future.”
As they coordinate with friends and family on the campaign, maintaining their full-time jobs and taking Norah to and from doctor’s appointments, there’s been one silver lining.
“We live in an age of sort of bubbles, and we know the people that are very similar to us,” Zach Gratz-Lazarus said. “Having gotten this diagnosis has opened us up to a whole new world of people who we wouldn’t know otherwise, and it’s really humanizing in a powerful way.”
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