A 9-year-old Zelienople boy’s health crisis sheds light on the need for diversity in organ donors

Jax Ramirez, 9, shows his glucose levels tracked on a phone app, Monday, March 18, in his yard in Zelienople. (Photo by Stephanie Strasburg/PublicSource) 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...