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