Zelienople family heads to Stanford to find cure for child’s rare illness
For most of his life, Jackson “Jax” Ramirez has been largely isolated from the outside world due to a rare autoimmune condition he was handed at birth — IPEX. Even the most common infections can create a deadly immune response in his body, so his family has kept him away from large crowds to avoid the risk of infection.
It seemed as if the only way for Jax to overcome the condition was a lifesaving bone marrow donation, and the Ramirez family has spent years trying to find someone who could provide it, without success. However, this year, the Ramirez family are taking another path — a clinical trial conducted at Stanford University, led by Dr. Rosa Bacchetta, which could point the way toward a viable gene therapy for IPEX.
Out of dozens of patients taking part in the clinical trial, Jax is the first child to do so.
“We decided to move forward with the clinical trial, since it became available to us, and it’s seemingly one of our only options,” the boy’s mother Melissa Ramirez said.
In July, cells were extracted from Jax’s body for genetic modification. The modified cells were re-implanted into Jax’s body the following month. Now the Ramirez family is playing the waiting game, going through check-up after check-up to see how Jax’s body is handling the transplant.
“Now, we have to remain here for a variety of checkups and follow-ups,” Melissa Ramirez said. “And then they'll send us home, and then we'll return in February and then again in August (2025) to see if his cells remain stable.”
Given Jax’s condition, there was no way he could take a commercial flight to California, or even sit in an airport. To get to Palo Alto, the Ramirez family relied on the help of Zelienople business owner Aaron Rectenwald, the owner of Rectenwald Construction, who paid for a private plane to take the family to the West Coast.
“Jax is a Zelienople kid. Everyone knows us,” Melissa Ramirez said. “When folks learned of this potential opportunity … he put us on this private jet.”
For the duration of their stay in Palo Alto, the Ramirez family have been staying on the property of a generous family.
“They are giving it to us free because the costs are many out here,” Melissa Ramirez said. “It’s very costly.”
Despite spending the last few months in California, three hours behind her permanent home in Zelienople, Melissa Ramirez is still employed with the Pine-Richland School District as a counselor and is working remotely.
“It’s very difficult on the family, because I’m working in Pennsylvania hours in California,” Melissa Ramirez said. “I’m up very, very early.”
While the family’s trip to California is by no means a vacation, they are making use of the free time they have to give Jax some much-needed fresh air that Western Pennsylvania isn’t able to provide.
“It’s a little bit easier here (for Jax) to function because it’s always sunny and warm,” Melissa said. “Back at home we’re pretty isolated, and here we can do a lot more exploring. We can take opportunities to do different hikes and see different outdoor sites.”
Although Jax is going through a clinical trial that seeks to bypass the seed for a bone-marrow transplant, the Ramirez family is still seeking a bone marrow match, just in case the Stanford trial comes to nothing. Even from the other side of the country, Melissa is still organizing “Be the Match” events to gather saliva samples. One such event is planned for the Lawrenceville Cookie Tour in December.
Anyone can submit their swab samples to the National Marrow Donor Program (formerly known as Be The Match) to see if their bone marrow is a match for someone with a life-threatening disorder that requires a transplant. To find out how, visit bethematch.org.
