Zelienople boy with rare illness receives Make-A-Wish gift
CRANBERRY TWP. — Young Zelienople resident Jackson “Jax” Ramirez is now fully prepared for an adventure.
On Wednesday morning, Jax and his family received a Make-A-Wish gift of two tandem kayaks and a set of outdoor gear from the Public Lands store in Cranberry Township.
Jax, 7, was diagnosed with a rare life-threatening autoimmune disorder called IPEX in October 2021. He has stayed isolated with his family since 2017 to protect his health. Since his diagnosis, Jax’s family has been searching for a bone marrow transplant match for Jax — a treatment that would save his life and could give him the chance to have a normal childhood.
Outdoor activities like kayaking are one way he and his family can spend time together away from other people and have fun.
Missy Ramirez, Jax’s mom, has worked with family, friends and outside organizations to hold more than 100 events in Western Pennsylvania and register more than 4,000 people since fall 2021 to see if they are Jax’s perfect bone marrow donor match. As of yet, the family has not yet found a match.
Despite the long journey, she says that Jax has stayed positive. The wish granted on Wednesday means a lot to Jax’s family, Ramirez said.
Anyone between the age of 18 and 40 can swab to see if they are a match for Jax, Ramirez said, at a number of upcoming events, or by texting JAX to 61474 to receive a test kit at home. 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.
“You just swab your cheek and you send it on in. It’s so simple,” Ramirez said. “Why not join the registry and give somebody a lifetime of happiness?”
Jax’s family and friends will be at a number of local events to test anyone who wants to see if they could be the match for Jax. Test swabs will be available at the Open Air Market in Zelienople on June 9 and June 23, Domenico's Ristorante on June 10, at Zelienople Park on June 11, at the Mars Brew Fest on June 18 and at the Evans City Purse Bash on June 25.
