Diagnosed with a rare immunodeficiency disease that affects only males, 3-year-old Jacob Santos Martinez began a struggle to keep his life shortly after he was born.
The UCLA chapter of the Nu Alpha Kappa fraternity, upon hearing the news of Jacob’s disheartening condition, teamed up with the National Marrow Donor Program on Monday and joined the campaign to help him and other patients in need of transplants.
“The National Marrow Donor Program is our national philanthropy,” Nu Alpha Kappa Community Service Chair Bryant Florez said. “Together with the NMDP, we want to increase registration for bone marrow and blood-cell donors and to find a match for Jacob.”
Jacob has X-linked lymphoproliferative (XLP) syndrome, an immunodeficiency disorder that requires the little boy to receive monthly blood transfusions.
Though his life is at risk, Jacob has no visible signs of illness ““ he swims, draws and plays with his single father like other healthy children, NMDP administrative assistant Sandra Suarez said.
“Jacob can play just like any other little boy, but if he’s running or playing or if he wants to scream, his father has to stop him,” she said. “The XLP limits him. … It slows their immune system down.”
And it is possible for Jacob to be cured ““ but without a matching donor he could still lose his life.
The brothers of Nu Alpha Kappa, a Latino-based fraternity that encompasses and accepts all cultures, are determined to save Jacob.
In their quest to help him, the brothers dedicated their Monday to standing on Bruin Walk in the heat.
Pictures of Jacob, eyes wide with a smile across his face, were displayed near a Nu Alpha Kappa sign, reminding the brothers of the life they were fighting for, as they encouraged passersby to join the National Marrow Donor Program’s official registry.
The registry allows donors to search for potential transplant matches, NMDP Program Manager Pat Conlee said. “If we increase the amount of donors on the registry, we can increase the chances of a patient like Jacob finding his match,” she said.
Donors with diverse racial or ethnic backgrounds were specifically sought after.
“We are mainly here to encourage minorities, who tend to have a low involvement with drives like these, to register since patients are more likely to match someone of their own race and ethnicity,” Florez said.
Insufficient numbers of registered donors means patients are constantly searching for donors, according to the press release about the event.
More than 6,000 men, women and children look for donors on the registry daily, according to the release. Patients include victims of leukemia, lymphoma and other life-threatening diseases.
Many of the diseases can be cured by a marrow or blood-cell transplant, the press release read, but as few as 20 percent actually receive these life-saving transplants. To help remedy the shortage of donors in the future, Nu Alpha Kappa plans to continue to hold drives with the program, as it has done in the past, Florez said.
“We held a drive in October, which successfully met its quota of having at least 40 new registered donors,” he said.
Monday’s drive, part of the program’s national “Thanks Mom” marrow-donor drive in honor of Mother’s Day, was one of more than 400 taking place across the nation. The National Marrow Donor Program strives to increase the number of donors on its registry by 20,000, according to the press release.
Nationwide, the Nu Alpha Kappa fraternity has registered over 1,000 people.
“This time, the UCLA chapter of NAK successfully surpassed their original goal, registering nearly 50 new donors,” Florez said.