Zelienople parents still searching for bone marrow donor for son
Jackson “Jax” Ramirez was only 2½ years old when his parents realized something was seriously wrong with his health. That 2017 holiday season, the Ramirez family was on the way to a Christmas tree farm when their child’s health took a turn for the worse.
“We were on our way to go cut down a tree when Jax began to have symptoms, and I didn't know what they were,” said Jackson’s mother, Melissa, who is a child psychologist in the Pine-Richland School District. “That was when he was diagnosed with Type 1 (diabetes). He was literally on the verge of death by the time we got to the hospital.”
But that was just the tip of the iceberg. Over the years, Jackson began to experience numerous illnesses and came dangerously close to death time and time again. At age 4, he was intubated as a result of the flu.
“Everything that happened to him, he would get so incredibly sick,” Melissa said. “We were like, ‘something else is happening.’”
Eventually, Jax was taken to UPMC Children’s Hospital of Pittsburgh for a screening, where it was determined he was suffering from IPEX, a rare, life-threatening genetic immune system disorder. If a bone marrow transplant could not be found for Jackson soon, he could lose his life.
“Anything could happen at any moment,” Melissa said. “He's on an incredible level of medication, and his body will just continue to get progressively worse.”
The Ramirez family is praying they can find a donor whose bone marrow will be the right match for transplanting into Jackson and potentially saving his life. Ever since Jackson’s diagnosis, the family has set up numerous events where attendees between the ages of 18 and 40 could get their cheeks swabbed to find out if their bone marrow is be a match.
Last year, they managed to find three people who had matching bone marrow for Jackson. However, all three potential donors turned out to be “unavailable” — meaning they either declined or they failed to respond to phone calls or emails.
“It was probably worse than getting that initial phone call,” Melissa said about hearing that news. “We were holding our breath for so many months. We waited until the end of September, and they had finally gotten hold of all three individuals and they had their answers, which was they were uninterested in moving forward.”
Hope DiGioia, a family friend, set up a GoFundMe to support the family. The money from this GoFundMe is largely to make up for the income the family has lost as a result of Jackson’s illness. His father, Pete Ramirez, left his job as a teacher at Propel Charter Schools to take care of Jackson full time. As of Friday, Oct. 20, the GoFundMe has raised $32,391.
Due to his condition, Jackson has been forced to stay isolated from the outside world for the most part. He attends school virtually through Seneca Valley’s cyber program. Even crowded family get-togethers during the holidays are a no-go for Jackson.
He does venture outdoors occasionally with his family for outdoor adventures, but only in situations where the risk of human contact is minimal and crowds are small.
“We go outside, we kayak, we bike, we hike, we do whatever his body can handle,” Melissa said. “We don't go into public when it's the busiest day of the year at whatever it is.”
One notable exception took place earlier this year, when Jackson convinced his family to take him to Target in Cranberry Township to go back-to-school shopping in person. To minimize the risk to Jackson, the family went during the early morning hours before the store got busy.
It wasn’t enough to prevent them from a vicious encounter. According to Melissa, at some point during their shopping trip, another family blocked an entire aisle and mocked the Ramirezes for wearing masks, calling them “sheep” among other things.
“They called us all kinds of incredible names, and they harassed us for wearing a mask,” Melissa said. “And they harassed Jax for doing that as well. They said I was hurting my own child and putting him at risk. They said something to him about how his mother was brainwashing him.”
To add insult to injury, according to Melissa, no one stepped in to intervene.
“I don't try to reason with the unreasonable, so we just walked away,” Melissa said. “Jax said, ‘Mom, what was that?’ And I said, ‘Sometimes, unfortunately, people make bad choices. And that was a bad choice.’”
The Ramirez family urges anyone between the ages of 18 and 40 to add themselves to the Be the Match donor registry by texting JAXRAMIREZPA to 61474.
“You can be a hero. If not for Jax, then for somebody else,” Melissa said. “It's as easy as a plasma donation, so I always say anybody between 18 and 40 should unequivocally be on the registry, barring their own health conditions.”
