On the road from the West Coast back to Western Pennsylvania, Pine-Richland School District psychologist Missy Ramirez received a text message from a friend.
“Let me know when you’re coming. Pull off the exit. People want to meet you.”
Missy replied to the effect of, huh?
“OK, the cat’s out of the bag,” her friend answered. “The town wants to escort you back in when you come home.”
She, husband Pete and their sons, Jax and Lincoln, were returning to Zelienople after an extended stay in California’s Bay Area.
The whole family accompanied Jax, who turns 10 in January, while he participated in a six-month clinical trial at the Stanford University School of Medicine for treatment of a rare genetic disorder.
A few days before Thanksgiving, as the Ramirezes disembarked from Interstate 79 onto Route 19, they were greeted by well-wishers including members of the Harmony Fire District.
“They had the sirens blaring,” Missy said. “They had all the trucks lined up when we pulled into town, decorated with Christmas lights. Everybody was beeping and waving.”
People in her hometown and the school district that employs her have aided the family in numerous capacities since Jax was diagnosed in October 2021 with IPEX syndrome, which causes the body’s immune system to attack healthy tissues.
Since then, the search has been on for someone who can donate stem cells to provide him with the opportunity for a bone-marrow transplant. So far, no match has been found.
Going to California
In the spring, the Ramirezes packed up and headed to the Golden State, where Jax became the first pediatric IPEX patient to undergo an FDA-approved trial involving gene therapy. The clinicians started by exploring his body’s systems of organs.
“He had a central line placed in his neck, and over the course of about five hours, they extracted very specific cells,” his mother said. “After that, it took about a month and a half to genetically modify the cells.”
Jax received the modified cells on Aug. 21.
“That would be what we consider his rebirth day, when he was kind of given this new potential lease on life,” Missy said. “I don’t want to say new lease, because they don’t really know.”
For the next three months, the clinicians monitored Jax’s progress, ensuring the modified cells weren’t toxic to him and determining how many were in his body.
Then it was time for his family to return home, at least until February, when he’s due for a checkup. And he still has two phases of the three-phase clinical trial to complete.
In the meantime, the Ramirezes can celebrate the holiday season knowing that members of their community are ready and willing to take care of them. One example occurred the morning before Thanksgiving, according to Missy:
“We had an anonymous stranger drop off a fresh farm turkey at our door, a 20-pound turkey.”
Other acts of generosity include Black Knight Chimney Inc. of Evans City giving theirs a cleaning, the folks from the YouTube channel “Outdoors with the Morgans” delivering a cord of firewood, and neighbors providing basic groceries, as the house pretty much was devoid of food after being vacant for half a year.
“I couldn’t ask for a more supportive village of people,” Missy said, and that applies to the Californians they met, as well.
Making friends
“For a place where we literally knew no one, we found a bunch of people to take care of us,” she said. “They’re genuinely friends and family now, which is amazing.”
One family allowed the Ramirezes to stay in their casita, a cottage on the property, at no charge.
“Even with free housing, it was incredibly costly to be out there. We were shocked. Gas is like $5.19 a gallon,” Missy reported. “And all you do is drive in California, because everything’s about an hour to get to. We were in gridlock all the time.”
Her family enjoyed the perpetually nice weather, though. Given Jax’s condition and the susceptibility of his immune system, the Ramirezes tend to spend a lot of time outdoors and away from places where people gather.
“We were able to explore new lands and go on hiking trails and see the coast, be on the beach,” she said. “And it’s not crowded. It’s not like everyone is going to the same place. Of course, the stores are, but we don’t go to those, anyway.”
As far as expressing gratitude for all the largess extended to her family, she has plans involving the first person, an adult, to participate in the same clinical trial as Jax.
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“He and I have joined forces, and I think we might be undertaking a foundation,” Missy said. “Our goal is to get financial assistance and education to families. I think that might be my giveback.”
In the meantime, she may have a good gift idea for the aspiring musician of the family.
“Jax kept up on his guitar lessons,” she said, “and now he wants an electric guitar.”
For more information, visit www.facebook.com/bethematchforjax.