Zelienople family seeks bone marrow transplant match for son
Jackson “Jax” Ramirez’s life has been unusual since he was 2-and-a-half years old.
He was diagnosed with Type 1 diabetes at an early age, and has had a number of autoimmune disorders since then. Now 7 years old, he was diagnosed with a rare genetic condition called IPEX in October.
“I’ve been questioning things since he was 2 years old,” said Missy Kuban, Jax’s mother. “I was always on a quest to find answers, and I kept pushing and pushing and pushing. Finally, over the summer, before he was diagnosed, I had pushed for a genetic panel to be run on him, and that is when we found out”
Jax’s family is now searching for a bone marrow transplant which could save his life.
“It will save his body — his body has an autoimmune disorder built up against every organ in his system,” Kuban said. “It will stop that gene from operating. It’s not going to get rid of Type 1 diabetes, but it’s going to get rid of everything else. We might almost be ‘living a normal life’ at some point.”
Before Jax can get to that point, though, he needs a match — someone who would be able to donate bone marrow that could be safely transplanted for Jax.
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