Norah is only 4 years old, but a lot has happened in her short life.
“I wake up crying some days,” said her father, Alameda resident Zachary Gratz-Lazarus. And some days, “I wake up charged and ready to save some lives.”
Norah has Fanconi anaemia, a gene disorder that greatly increases her chance of developing leukemia and other bone marrow problems. It’s very rare, with around 30 children diagnosed each year in the U.S.
But Norah can be treated if she finds a matching bone marrow donor, which is why the Gratz-Lazarus family has set up a website campaign to find one. “Norah Needs You” urges people, especially Ashkenazi Jews, who are more likely to be a good match for Norah, to sign up for the U.S. bone marrow registry.
It’s a simple process to register: a cheek swab, not unlike one done for any DNA test. The odds of any one person being a match are small, so the more people who sign up, the better. Gratz-Lazarus urged everyone to register, Ashkenazi or not, as the registry is shared among all patients who need a bone marrow match. The program is called Be the Match and is run by the National Marrow Donor Program. Donors can be between 18 and 60 (but preferably under 45), must live in the U.S. and must be willing to donate to any patient they’re a match for (not just Norah).
Without a bone marrow stem cell donation, Norah has a 90 percent greater chance of developing leukemia, other cancers or bone marrow failure. Gratz-Lazarus understands that the idea of giving bone marrow sounds “scary” but said it’s just a matter of education. “I think people don’t sign up because they don’t know,” Gratz-Lazarus said. “It’s just an unknown.”
The process is usually fairly straightforward and not unlike blood donation. “They take the blood out, remove the stem cells, and put the blood back in you,” he explained.
And for Norah, a match could mean everything. Unfortunately, neither her parents nor her 2-year-old brother are a match. The family is aiming to get 10,000 people to sign up through “Norah Needs You.” The current total stands at around 450 after only four days, and the family hopes the number will be even higher by Dec. 21, Norah’s 5th birthday.
“This is about the community showing up for each other in the most basic way,” Gratz-Lazarus said.