4-year-old Alameda girl diagnosed with rare genetic disorder, family urging donors to join registry

ALAMEDA, Calif. (KTVU) - An Alameda family is reaching out to friends, family, colleagues, strangers and synagogue members to help find a bone marrow match, not only for their 4-year-old daughter, but for the thousands of people across the country who also might need a transplant. 

Norah Gratz-Lazarus was recently diagnosed at Kaiser Permanente in Oakland with a rare genetic disease called Fanconi anemia, which affects her ability to produce new blood cells and interferes with her body’s ability to properly repair its DNA. If untreated, this disease increases her risk of leukemia or bone marrow failure to 90 percent.

Her father, Zach Gratz-Lazarus, a social worker for the Alameda County Public Defender’s Office, said that his funny, energetic pre-schooler doesn’t need a bone marrow match now, but likely will in a few years.

So, in the meantime, he and his wife, Rachel Gratz-Lazarus, a tobacco control program specialist for the Alameda County Public Health Department, are trying to beef up the Be the Match nonprofit operated by the National Marrow Donor Program for the entire United States.

As of a few days ago, they had personally gotten 444 people to sign up, from co-workers to a rabbi in New York, and people they don't personally know in Florida, Gambia and Israel. 

“We assume Norah will need this,” Gratz-Lazarus said. “But we want to help save the lives of others, too.”

The Bone Marrow Registry already has 30 million donors worldwide, but minority populations such as Ashkenazi Jews like Norah, and other mixed-race communities, don’t have as robust a selection.

According to the Be the Match's 2017 annual report, the likelihood of finding a match is 23 percent if a patient is black and 77 percent if a patient is white.

“We want to make the pool more rich and diverse,” Gratz-Lazrus said. Originally, his family had hoped to reach 1,000 people to join BetheMatch.org. Since, things are going so well, he said, his new goal is to register 10,000.  

Be the Match spokesman Gilbert Martinez added that while the number of donors is in the millions, the registry always needs more. "California has 42 million people," he said. "We have 14,000 people we can treat each year, but we can't always find a match." He said that 20 percent of those people who could be treated never get the transplant they need because they don't have a genetic match in the system.

In addition to talking to people in person and sending out emails and Facebook messages to anyone they know, Norah's family has also set up a “Norah Needs You” website, where there are pictures of the young girl in a turquoise princess dress, hugging her brother and lighting Hanukkah candles with her dad. She is an expert joke teller, modern dancer and an avid reader, her family said. 

Potential donors are asked to sign up at Swab For Norah. The donations are shared throughout the entire registry. Donors will be sent a kit at home where they will be asked to swab their cheek to see if they are a match. 

Anyone who is interested can learn more about Norah and her journey at: www.norahneedsyou.com or on her Facebook page. For more information, contact the family directly at norahneedsyou@gmail.com.