Zelienople boy with rare illness receives Make-A-Wish gift
CRANBERRY TWP — Young Zelienople resident Jackson “Jax” Ramirez now is 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 such as kayaking are one way he and his family can spend time together away from other people and have fun.
“We’ve always been outdoor people, but ever since COVID in 2020, we’ve always tried to keep our distance, so that was the only thing to do,” said Pete Ramirez, Jax’s dad. “That really took us out even more. We hit the trails where no one else was. A lot of our time is spent just us four, so the outdoors is the ultimate place.”
Exploring the outdoors is the highlight of the family’s week, he said.
“They look forward to the weekends, because we are going out to nature,” he said. “We bike and hike and kayak every weekend, and that’s just what they love to do now.“
Jax, his younger brother Lincoln, 4, and his parents had the chance to explore the Public Lands store on Wednesday morning before other customers were allowed into the building. Jax arrived at the store eager to look around and already wearing his climbing gloves. With the store closed off to others, Jax peered into tent displays, picked out new gear and scaled a climbing wall.
“I’m really good at climbing,” Jax said. “I’ve climbed half a tree.”
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 a perfect bone marrow donor match for Jax. 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, she said.
“That kid fights every single day. He has bruises up and down his arm from IVs and infusions and everything, and today, he feels free,” Missy Ramirez said. “It’s critical, because the smiles, the stories, the experience, are going to last us forever. Those kayaks are going to last us forever. That’s a memory I don’t ever want to lose. It’s just anything to make him feel special.”
The process of trying to find a match has been particularly challenging for Jax because he is biracial, his mother said.
“There is not enough diversity on the registry as it stands to support kids like Jax, who are (biracial),” Missy Ramirez said. “If he was fully white, 80% of the time you’re going to find a match, but folks like Jax, who are Hispanic and Latino, only less than half, 48%, and then for African-Americans, it’s only 29%.
“There are kids dying because of their race. People of color should get the same chance as everyone to have their life saved.”
Want to help Jax?
Anyone between the age of 18 and 40 can swab to see if they are a match for Jax, Missy 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,” she said. “Why not join the registry and give somebody a lifetime of happiness?”
Upcoming events
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 Thursday and June 23; Domenico's Ristorante on Friday; Zelienople Park on Saturday; the Mars Brew Fest on June 18; and at the Evans City Purse Bash on June 25.
Jax’s wish is the first time that Make-A-Wish has partnered with the Public Lands brand, said Sarah Brown, assistant store manager.
“I remember having that thrill for the outdoors,” Brown said. “Being able to share that experience with someone at that age, it can change their life for the future.”
“We’re just unbelievably grateful to (Public Lands),” said Dana Antkowiak, senior manager of marketing and communications for Make-A-Wish Greater Pennsylvania and West Virginia. “They went above and beyond, truly.”
The process of getting a Make-a-Wish gift to a child starts with a referral to the organization, often from a child’s medical team, Antkowiak said. A common misconception, she added, is that Make-a-Wish only works with patients with terminal illnesses.
“A child has to have a critical illness or a life-threatening medical condition and be between the ages of 2 and a half and 18,” she said. ‘Once a child is determined to be eligible, we assign a team of volunteers. They meet with the family, virtually these days, and they talk to the children and ask them, if you could go anywhere, be anything, meet anyone, have anything, give something — those are the categories of wishes — what would that be?”
The local branch of Make-a-Wish covers 57 counties in Pennsylvania, and all of West Virginia. Pre-COVID-19, Antkowiak said, the branch granted upward of 600 wishes a year, and now the number is closer to 350 or 400.
