Zion Ortiz was a week old when he was diagnosed with hemoglobin SS, a form of sickle cell disease. Eight months later, he suffered a stroke, leading to complications such as a diagnosis of a rare disease callaed moyamoya, two surgeries, a 21-day hospital stay and two additional stroke-like episodes in later years.

“We’ve been trying to navigate that,” said Zion’s mother, Taniqua Bates. “The best option for Zion right now is a bone marrow transplant.”

Now 4 years old, Zion’s family’s yearslong search for a bone marrow donor is taking a step forward, thanks to a collaboration with NMDP, formerly the National Marrow Donor Program, and Be the Match.

 Zion Ortiz
 

Zion’s story will be featured in a national ad campaign by NMDP that began last month to encourage young people from diverse backgrounds to register as donors.

NMDP is looking for participants between the ages of 18 and 40 to register on its website, where they must complete a health history questionnaire. Once accepted, they’ll receive a swab test kit by mail.

Potential donors must use a cotton swab on both sides of their cheeks for about 10 seconds each, then return the kit by mail. Participants will be added to NMDP’s registry within six to eight weeks and may be called to donate at any time. If selected as a match, the donation process takes 20 to 30 hours over four to six weeks and is designed to accommodate their schedules.

“People just don’t know that we have stem cells in our body that can cure cancer, that can cure sickle cell, and that’s so important for people to understand,” said NMDP Public Relations Manager Erica Sevilla. “There’s so little we can control within this lifetime, but swabbing the inside of your cheek and giving somebody else a second chance at life, that’s huge.”

Before this collaboration, Zion’s family relied primarily on social media to find donors, sharing his story across platforms and seeking advice in support groups. Bates connected with NMDP last fall through social media, leading to the new push for donors.

Finding a match has been especially difficult due to racial disparities in the bone marrow registry. According to NMDP, African Americans have a 29% chance of finding a fully matched donor, compared to 78% for white people.

Because Zion is of African American and Puerto Rican descent, his chances of finding a matching donor are less than 50%. African Americans make up just 8%, and Hispanics/Latinos make up 13% of the donor registry.

Relying on family members also is challenging. Bates and Zion’s father, Andre Ortiz, are only half matches, and his twin sister, Nuri, his only fully related sibling, isn’t a match.

“A child who is biracial is going to have a harder time finding somebody who has a similar makeup in terms of their genetics,” said Sevilla, who has a multiracial daughter. “Thirty percent of patients overall will find a matching donor within their family.”

Two years ago, a fully matched donor for Zion was identified in Brazil, but they became unavailable. Sevilla said this is common, as potential donors decline about 50% of the time—some for medical reasons, but more often due to misinformation about the process.

Meanwhile, research continues to advance. Scientists are studying genetic markers that affect how the immune system responds to donated cells, and clinical trials are exploring transplant options for leukemia and cancer patients without fully matched donors.

“It may look hopeless, but it’s not,” Sevilla said. “The science continues to evolve, and we’re doing everything we can to erase that disparity and provide the best possible donor for everyone.”

For Bates, the strength Zion has shown—even with ongoing medical treatments—has been a source of inspiration.

 Zion looks out for a brighter future.
 

“As a parent, it’s obviously stressful. It’s the most stressful thing I’ve ever experienced,” she said. “But I tell everybody, Zion is the most incredible 4-year-old. He’s the strongest kid I’ve ever met.”

Those interested in donating are encouraged to text SAVEZION to 61474 or visit my.nmdp.org/savezion.