BUTLER, Pa. — In many ways, Jackson “Jax” Ramirez is your typical 11-year-old boy.
He has never turned down a snow day. The big weekend snowstorm was a dream come true for him. He loves playing outside with his little brother Lincoln and his parents. He dreams of playing on a soccer team one day. He’s silly and smart, too.
While his parents are proud of their patient and resilient boy, they wish he wasn’t one in a million. One in 1.6 million, to be exact.
In 2021, Jax was diagnosed with IPEX syndrome, an extremely rare condition that only impacts one in every 1.6 million people. IPEX has triggered major autoimmune disorders for Jax, like Type I diabetes.
“To see a boy go through a lot, you know, it weighs on you,” Peter Ramirez, Jax’s father, said through tears. “The downs have been hard. Plenty of hospitalizations, a lot of strange sicknesses to the point where the ER was involved.”
“Ambulance rides,” mom Missy Ramirez said, finishing her husband’s thought.
“Diagnoses of Type 1, myasthenia gravis,” Peter Ramirez added.
The couple has seen their child suffer since he was a toddler. Even a cold can land him in the hospital. The family is forced to take a lot of precautions to keep Jax safe. Both boys are cyber-schooled; they don’t participate in team sports or go to events with large crowds.
“We spend every day almost holding your breath because you don’t know what’s coming,” Missy Ramirez said.
Many children diagnosed with IPEX do not survive childhood.
The Ramirez family is doing everything in their power to save their son.
“We had been searching for a blood stem cell transplant for years. They told me it could last sometimes up to 10 years, and we don’t have that kind of time,” Missy Ramirez said.
The Butler County family took a big leap in 2024, entering Jax into a clinical trial at Stanford University. After many weeks of testing, he was accepted into the trial as its first pediatric patient.
The first big hurdle was navigating trips to the West Coast with Jax’s immune system. He is too vulnerable to fly on a commercial flight. A business owner who heard about the family’s story stepped up in a huge way, volunteering his private jet for the family to travel back and forth from Pennsylvania to California.
“I just continue to be humbled and blown away by the amount of love on this street alone,” Missy Ramirez said, talking about the community’s support.
The Ramirez family lived in California for almost a year while Jax underwent gene therapy.
The move was a huge adjustment for the boys and a major commitment for the family. Then they got some good news.
“At the 9-month mark, labs started changing for the better. And then at the 12-month mark, labs were even better,” Missy Ramirez said.
Jax has grown a lot since starting gene therapy. His parents note a lot of physical changes. He no longer has light sensitivity, he’s grown taller and stronger, and doctors are weaning him off medications he’s relied on for years.
Researchers are hopeful the treatment could be a long-term solution and a game changer for other IPEX patients in desperate need of a cure.
But to get to phase two of the trial, they need to bridge a $2 million funding gap.
“It’s so important that we raise this money,” Peter Ramirez said through tears.
That’s where community comes in.
“My opinion is this is what happens in small town America,” said Rich Gigliotti, a member and past president of the Zelienople Rotary Club.
The club is planning a winter open-air market, Hearts for Jax. It is happening on Tuesday, Jan. 27, from 4-10 p.m. on Zelienople Main Street. More than 30 local businesses are participating.
“Our tattoo shop on Main Street is opening and going to be donating proceeds, our candy stores, our Lego stores, our restaurants of course, our breweries,” Gigliotti explained. “We have a goal and we have to obtain it, and not obtaining that goal is just not an option.”
Organizers are asking people to attend Tuesday’s event, with proceeds from every business involved going to support the clinical trial.
For anyone who would like to donate to the cause, you can give directly to the IPEX Foundation via PayPal, with 100% of the proceeds going to the clinical trial fundraiser.
“Jax and I have a little phrase. Together we can do hard things,” Missy Ramirez said. “There’s always a way.”
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