Are you the match for Jax? This Pa. 7-year-old needs a life-saving transplant | Monday Coffee

Jax Ramirez, 7, of Butler County, needs a bone marrow transplant before it’s too late. Can you help?

February 14, 2022 7:09 am

Jax Ramirez, 7, with his parents Pete Ramirez and Missy Kuban Ramirez (Submitted Photo).

Good Monday Morning, Fellow Seekers.

Jax Ramirez is like a lot of other 7-year-olds. He runs. He jumps. He plays. But unlike a lot of other kids his age, he also has a rare autoimmune disorder. It’s attacking his internal organs. It’s slowly killing him.

And he needs your help.

“Lots of things have happened to Jax in the last two-and-a-half years to the present — from multiple hospitalizations, to him almost losing his life,” Jax’s mother, Missy Kuban Ramirez, a school psychologist in the Pine-Richland School District in Allegheny County, told the Capital-Star last week.

“Since 2017 we have been in our own quarantine and so I always think that March 13, 2020, the world then felt like what we have been feeling like,” Missy Ramirez told WTAE-TV in Pittsburgh last year.

In October 2021, doctors ran a “genetic panel, and came back with [IPEX Syndrome] It’s very rare, one in 1.6 million people have it. It’s an autoimmune disorder,” she said. “He is building antibodies in every organ in his body. It will be fatal if we don’t act.”

As if that wasn’t enough, here’s where things got really complicated for the family from Zelienople, Butler County, who also include Dad, Pete Ramirez, and little brother Lincoln, who’s just four years old.

“Because it’s genetic, I found out that I have it,” Missy Ramirez told the Capital-Star. “I am not affected because I have two [X chromosomes] and he has one. His brother also is negative. The only known curative to deal with it is a bone marrow transplant.”

The best outcome, she continued, would be Lincoln Ramirez to be a match — but he wasn’t, Missy Ramirez said.

“The next best thing is a perfect match in the community. When we ran the registry in October, there was no match — 30 million on people on registry and not one is a match,” she said, the frustration rising in her voice. “We ran it again at the end of December and no match.”

Because of Jax’s unusual lineage — he’s a mix of Mexican and German on his father’s side, and Slovak, German and Irish on his mother’s side — it’s made it nearly impossible to find a match.

Jax already was contending with Type 1 diabetes before his diagnosis, according to the Tribune-Review.

He’s since developed another autoimmune disorder known as Myasthenia Gravis which destroys communication between a person’s nerves and muscles, Missy Ramirez said. And it’s now attacking his eyesight.

“If we don’t act now, he will continue acquire autoimmune [disorders] until his body gives out,” Missy Ramirez said.

The ‘Be the Match for Jax’ flier (submitted).

“He’s on a litany of medications. It’s so terrible. When I talk about it for us it’s second nature,” Missy Ramirez continued. “When I think about a normal seven-year-old, they’re not taking immunosuppressive drugs. He’s happy. He runs, he plays. We don’t know when this thing is going to show up and create another autoimmune disorder. It’s hard — because I don’t want to lose him.”

That’s where you come in — and, for you, it’s not hard. You can scan the QR code above, text “JAX” to 61474, or visit this ‘Be the Match’ website to learn more about how you can help.

According to Missy Ramirez, it’s as easy as swabbing the inside of your cheek, popping the swab in the mail, and then finding out if you’re a match. Anyone aged 18-40 can participate. So far, 800 people have participated, but the family is still looking for the match.

“A simple cheek swab could save a family from losing a loved one,” Missy Ramirez said.

Pennsylvania State Capitol Building. (Capital-Star photo by Cassie Miller.)

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12 p.m., G50 Irvis: House Democratic Policy Committee

Gov. Tom Wolf has no public schedule today.

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The Los Angeles Rams narrowly edged out the Cincinnati Bengals on Sunday night, winning 23-20 at SoFi Stadium, to win Super Bowl 56. The Rams’ Sean McVay is the youngest NFL coach to take home a championship ring.

And now you’re up to date.

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John L. Micek

A three-decade veteran of the news business, John L. Micek is the Pennsylvania Capital-Star's former Editor-in-Chief.