Be the Match for Jax: Pine-Richland psychologist seeks marrow donor on behalf of son

With the start of a new year, Jax Ramirez started guitar lessons.

“He made his first G chord,” his mother, Missy, reported, and if all goes well with the online instruction, he soon will be jamming to the likes of Ozzy Osbourne and AC/DC.

Befitting a boy about to turn 9, Jax enjoys racing remote-controlled cars, always looking for ways to soup ’em up for faster speeds.

As Western Pennsylvania weather allows, he heads outdoors for sessions of hiking, biking and kayaking. Inside, he’s likely to be engaged in a round of SnowRunner, a simulation video game in which players deliver cargo while driving over rough terrain.

“I come home, and Jax is talking to me about the Alaskan map and where his new job site is going to be,” Missy, a Pine-Richland School District psychologist, said. “He’s a neat kid.”

Yet beyond his immediate family, Jax rarely encounters anyone in person.

In October 2021, he received a diagnosis of something with the thoroughly cumbersome name of immune dysregulation, polyendocrinopathy, enteropathy, X-linked syndrome. Suffice it to say that problems with how his immune system functions relegate him to spending most of his time with Mom, father Pete and 6-year-old brother Lincoln.

“We’ve been living in isolation for years, long before covid,” Missy said. “He has no concept that there are kids his age in baseball and soccer and all of those things. We don’t talk about it. I’m not going to tell him about things we can’t do.”

A continuing search

What Pete and Missy Ramirez can do is hope for a donor.

A potentially life-saving treatment for IPEX syndrome is a bone marrow transplant, albeit from someone with stem cells that are a match for the recipient. In Jax’s case, two-plus years of searching has produced three such people, but all declined for health-related or other reasons.

So the Ramirezes continue to look, and they receive plenty of help from within Pine-Richland and their home school district, Seneca Valley, of which Missy is an alumna.

The latest outpouring of community support took place Jan. 9, when Jax Night was proclaimed for the basketball game between the respective high schools at Pine-Richland.

Players, cheerleaders and fans from both sides donned awareness-promoting “Be the Match for Jax” T-shirts specially produced for the occasion, and various fundraising activities took place, including a bake sale and half-court foul-shooting contest. For the latter, Pine-Richland senior Connor Dripps sank the second shot of the night to win a year’s worth of Dairy Queen Blizzards.

On the IPEX front, people in attendance between ages 18 and 40 had the opportunity for a brief cheek-swabbing procedure to determine if they are compatible with Jax for marrow transplantation.

The samples are tested by NMDP, a nonprofit formerly known as the National Marrow Donor Program and Be the Match, which compiles a registry of donors. Anyone of requisite age can arrange for a cheek swab by texting “JaxRamirezPA” to 61474 or visiting my.bethematch.org.

‘We should probably do something’

Assisting Jax’s mother in arranging for the game’s special activities were Pine-Richland sophomore Elise Duckworth and Seneca Valley senior Tayla Fullerton.

“My freshman year, I was in a journalism class, and Missy came in for an interview,” Elise said, and learning about Jax inspired her to take up his cause.

“So I went down and talked to the principal, my first time ever meeting him,” she said about high school administrator Frank Hernandez, “and was like, ‘Hey, we should probably do something about this.’ And we have a lot of stuff going on now, so it worked out.”

For Tayla, spreading the word about Jax and his needs constitutes her senior graduation project.

“I get to build skills with marketing on social media, but I also get to help someone younger than me who goes to my school and help a greater cause,” she said. “It’s something I wasn’t familiar with, so I got to do research and find out what ‘Be the Match for Jax’ is all about.”

Suggesting the basis for the project was Erin Schollaert, who is teaching a new College in High School marketing course at Seneca Valley through Robert Morris University.

“I was able to take all of Robert Morris’ curriculum and teach it to the kids, the concepts of marketing. And then Tayla grabbed a hold of it and used the skills to help Jax. It was genuinely a real-life learning experience,” Schollaert said.

She learned about Jax’s situation through Denise Manganello, principal of the Seneca Valley Academy of Choice cyber program, which he and Lincoln attend under the supervision of their father.

‘Enjoy the moments’

“The true unsung here is my husband, because he’s at home with them every day,” Missy said about Pete, a Hampton High School graduate. “He’s the one who helps facilitate cyberschool. While I’m sort of the face of everything, he’s keeping us all afloat at home.”

For his part, Jax earned the academy’s Golden Heart Award in recognition of his friendliness and compassion.

“They get a lot of new kids in cyber, and he welcomes them, takes them under his wing, shows them how to do things,” his mother said. “All the moms will message me and be like, oh, your Jax was so sweet today. It’s good to know that we’re raising a good little soul.”

For their part, Pete and Missy can take consolation in their younger son’s clean bill of health.

“It was a 50% chance of him having IPEX, just because of the genetics. We tested him. He does not,” Missy said. “You can’t even celebrate that, because how do you celebrate when one’s ill?”

Long after wearing a mask was mandated, Missy continues to wear one in public, reducing the chance of carrying germs home. On top of her full-time job, she spends a considerable amount of effort advocating on behalf of not only Jax, but “anybody who needs a stem-cell transplant.”

All the while, she and her husband try to make the best of the figurative hand they’ve been dealt.

“You have to compartmentalize and put that everyday fear aside to enjoy the moments,” she said. “Otherwise, my kids wouldn’t be smiling.”