Family desperate to find bone marrow match for young boy with rare disorder

ZELIENOPLE, Pa. — A family in Zelienople is trying to find the perfect match for their 7-year-old son who’s in desperate need of a bone marrow transplant.

Jax Ramirez, a first grader at Seneca Valley, was diagnosed last year with IPEX syndrome, a rare genetic disorder. Jax needs a bone marrow transplant in order to live.

His mom, Melissa Ramirez, said there’s only a 48% chance to find the perfect match because there’s not enough diversity in donor drives.

“We have to look out in the community to find a needle in a haystack. They told me it was like winning the lottery, but I’m willing to take that chance to find that person,” said Melissa Ramirez.

It’s now critical for Jax to find a lifesaving match soon.

“They would like to do his transplant in late spring, so we have been working tirelessly to find a match for him, which is why we are pushing so hard in the community and nationwide for help; because we are running out of time, quite honestly, to be able to save him,” said Ramirez.

For months, there’s been a tremendous effort to help: businesses, school districts like Fox Chapel and Pine-Richland, universities and police departments like Northern Regional Police have all stepped up by holding events where people get tested to see if they are Jax’s match.

“It’s a humbling experience because when you just have to rely on the love and kindness of strangers to help our family,” said Ramirez.

There’s also been a nationwide search to save Jax’s life. Ramirez said if they can’t find the perfect match soon, they would use a non-ideal donor, which reduces Jax’s survival rate significantly.

“It’s been devastating, really and truly, and we are just praying, we are just hoping a stranger can save our family and our son,” said Ramirez.

There are two social media platforms advocating for Jax, “Be the Match for Jax” on Facebook, and @BeTheMatchforJax on Instagram.

To join the national bone marrow registry: Text JAX to 61474 or go to my.bethematch.org/jax.