Jackson “Jax” Ramirez’s life has been unusual since he was 2-and-a-half years old.

He was diagnosed with Type 1 diabetes at an early age, and has had a number of autoimmune disorders since then. Now 7 years old, he was diagnosed with a rare genetic condition called IPEX in October.

“I’ve been questioning things since he was 2 years old,” said Missy Kuban, Jax’s mother. “I was always on a quest to find answers, and I kept pushing and pushing and pushing. Finally, over the summer, before he was diagnosed, I had pushed for a genetic panel to be run on him, and that is when we found out”

Jax’s family is now searching for a bone marrow transplant which could save his life.

“It will save his body — his body has an autoimmune disorder built up against every organ in his system,” Kuban said. “It will stop that gene from operating. It’s not going to get rid of Type 1 diabetes, but it’s going to get rid of everything else. We might almost be ‘living a normal life’ at some point.”

Before Jax can get to that point, though, he needs a match — someone who would be able to donate bone marrow that could be safely transplanted for Jax.

Jax’s family has hosted a number of events in the past months to encourage people between the ages of 18 and 40 to swab their cheeks and get tested to determine whether they qualify.

Two events are upcoming in local schools: one from 4:15 to 7 p.m. Tuesday at Haine Middle School and one from 4:15 to 7 p.m. March 7 at Connoquenessing Valley Elementary School.

“If you’re between the age of 18 and 40, what I have been telling everybody is to go swab your cheek because you can literally be the cheek that saves someone,” Kuban said. “It can be anyone. It just really depends on that person’s genetic makeup.”

Even if someone who swabs is not a match for Jax, they will be able to join a registry to see if they are a match for other patients in need of a transplant.

Another swab drive will take place at the Shamrock Shuffle race event in Zelienople on March 26.

Jax’s immunocompromised condition means he and his family have stayed isolated since 2017, long before the COVID-19 pandemic. He attends online school, and his family avoids contact with others.

“I sign him up for little online things with other kids, but ultimately we’re kind of isolated in our own home. We don’t go out to restaurants, we don’t go to grocery stores,” Kuban said. “We haven’t celebrated a holiday with family in years.”

Jax and his younger brother, Lincoln, still play outside and have fun, and the Ramirez family travels to local parks for “adventures” on their own, Kuban said.

“He and I were both off on Monday, and we, as a family, went hiking at McConnells Mills,” she said. “We went on what we call adventures — we always go on adventures. We walked along the water, and we took many, many trails. He was just beaming with happiness, him and his brother both.”

Jax and his family aren’t able to attend the swab drive events themselves, but Kuban says the work of others to help find a match for Jax has been incredibly impactful.

“I have a team of about 30 people who help volunteer at the events. They’re all helping me because of the love they have for Jax,” she said. “Our neighbor, Nan (Durny), has been one of what I call ‘Team Jax.’ Her and her husband are huge supporters of us.“

Durny is a coordinator of the drive that will take place at the Shamrock Shuffle event.

“(Jax) and I would always sit in the grass between our driveways, and we would look for four-leaf clovers. We’ve been doing that since he could walk,” Durny said. “We’re just looking for a different kind of clover now.”

Participants will be able to register to swab at the Shamrock Shuffle itself, and they do not need to preregister, Durny said.

“We can scan a QR code on our phones right there if they don’t have a phone with them, and they’ll be swabbing right there, we have swab kits,” she said.

Anyone interested in testing can also sign up at join.bethematch.org/jax, or text “Jax” to 61474.