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.
“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.
In this week’s edition of The Numbers Racket: A survey, the findings, and a tweet about income. Cassie Miller explains how it all fits together.
Marley Parish goes deep on the Wolf administration’s $1.55 billion K-12 education spending proposal, and how it aims to address inequities in funding between Pennsylvania’s 500 school districts.
Gov. Tom Wolf has signed an Alzheimer’s disease and dementia ‘toolkit’ bill into law. Cassie Miller explains what it means to you and your family.
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On our Commentary Page this morning: Opinion regular Dick Polman muses on what, if anything, will happen to former President Donald Trump now that he’s violated yet another law. And St. Joseph’s University political science professor Joe Powers makes the case for giving Presidents George Washington and Abraham Lincoln their own separate birthday holidays again.
The Inquirer looks at the differing campaign styles of U.S. Rep. Conor Lamb, D-17th District, and Lt. Gov John Fetterman, as they vie for the Democratic nomination for U.S. Senate.
The Post-Gazette investigates why Pittsburgh’s bridges are falling apart with little aid.
The York Daily Record runs down the 10 worst bridges in York County.
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Health experts in the Lehigh Valley talk to the Morning Call about what’s next for the pandemic.
The Citizens’ Voice has the latest pandemic data for Luzerne County.
An Independent Fiscal Office report finds that Pennsylvania seniors bore the brunt of COVID-19 fatalities, City & State Pa. reports.
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GoErie talks to Erie County residents who are contending with long-haul COVID-19 symptoms.
Legislation giving parents more say over curriculum and other policies could push teachers out of the profession, educators tell Stateline.org.
Roll Call updates on the latest on federal infrastructure funding.
Here’s your #Harrisburg Instagram of the Day:
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12 p.m., G50 Irvis: House Democratic Policy Committee
Gov. Tom Wolf has no public schedule today.
You Say It’s Your Birthday Dept.
Best wishes go out this morning to state Rep. Leanne Krueger, D-Delaware; to George Scott, of Dauphin County, and radio legend Dave Davies, all of whom celebrate today. Congratulations friends, enjoy the day.
My love for 80s pop band Spandau Ballet is well-established in this space. So, just in time for Valentine’s Day, the band’s big-voiced lead singer, Tony Hadley, put together a whole playlist of his favorite love songs. I know this much is true … there are some pretty fantastic selections in there.
Monday’s Gratuitous Football Link
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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