Jax Ramirez’s battle with a rare autoimmune disease highlights the challenges of finding organ donors, especially for patients of mixed heritage. His family’s search for a cure brings attention to racial disparities in organ donation.
by Jamie Wiggan, PublicSource
Inside the slender gable-front house where he sleeps, plays and studies, Jax Ramirez is never far from danger despite the reassuring small town setting.
Outside, the risks mount. He avoids crowds at all costs; he can’t fly on a plane, ride on a bus or attend school like his peers. His mom, dad and brother mask up whenever they’re in public. Other than medical practitioners, visitors rarely enter their Zelienople home.
But none of these precautions can keep 9-year-old Jax safe from a raging immune system ready to obliterate invading pathogens without regard for the consequences to his own body.
“People walk around with a sniffle, and that sniffle is deadly to us,” said his mom, Missy Ramirez.
Jax was diagnosed at 6 with a rare autoimmune disease, IPEX syndrome, for which the only known cure is a bone marrow transplant. His family has spent the past three years searching relentlessly for a match. Their efforts have added thousands of people to the donor registry and possibly saved other lives — but for Jax, the wait continues.
Complicating his situation, Jax has a diverse genetic makeup, which includes Hispanic of Mexican origin, Brazilian, African and mixed European ancestry.
“With bone marrow transplantation, you have to have a perfect match, so it puts people at a disadvantage if they have mixed heritage,” said Dr. Clive Callender, a transplant surgeon at Howard University who spearheaded efforts to diversify the country’s organ donor pool in the 1980s.
According to NMDP, a nonprofit advocating for donor registration, white patients in need of bone marrow have a 79% chance of finding a match, while the odds for Black patients are just 29%. Native American, Latino and Asian or Pacific Islander patients fall in the middle.
In Jax’s case, doctors have told the family: “To find his match is like winning the lottery.”