“He’s a fighter, just like me,” Jackson ‘Jax’ Ramirez told Helen Ubinas of The Philadelphia Inquirer about his favorite boxer, Philadelphia’s own Jaron Ennis, earlier this year. The brave young boy from Pennsylvania traveled to California for a clinical trial that could potentially save his life. Now, he’s received an incredible offer from the 27-year-old boxer, a gesture that could provide him a much-needed escape from the rare disease threatening his future.
Jax, who is 9 years old, suffers from a rare autoimmune condition, IPEX syndrome, which attacks his organs. So, he is participating in a clinical trial at Stanford Medicine Children’s Health. For years, he has been waiting for a bone marrow transplant, but in the last three years, after organizing more than 200 events to raise awareness and helping register nearly 7,000 new donors in Jax’s honor, sadly, no favorable developments have come out of it.
In 2022, three matches were identified, but ‘Jax’s’ mother, Missy Ramirez, revealed, “Unfortunately, one they couldn’t find, and two others said no.” Despite this setback, last year, they were approached for a clinical trial of a new gene therapy for IPEX at Stanford Medicine Children’s Health in California. The trials were led by a world-renowned expert in IPEX, giving the family a new hope.
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There was no solution in sight for ‘Jax,’ so his family had seriously considered participating, but flying commercially to California and staying in public residential services offered by the hospital would only pose more risks. This led ‘Jax’s’ family to make the gut-wrenching decision to refuse participation in the trials.
Then, sometime later, another call came from Stanford, inviting Jax to participate in the trials. The family anticipated the same challenges, but this time, a local businessman stepped in to help, offering crucial support that would make the trip possible. Aaron Rectenwald, the owner of TRC, offered his private jet to the family to travel to California. Jax’s family left in June, and the 9-year-old has been actively participating in the trial since then.
Jaron Ennis was first introduced to ‘Jax’ when the family campaigned to raise awareness for bone marrow donation. Since then, Boots and Jax have been close, regularly communicating with one another. Boots is about to fight Karen Chukhadzhian at the Wells Fargo Center in Philadelphia tonight. Before his second title defense, Matchroom Boxing shared a heartwarming clip of Jaron Ennis having a FaceTime conversation with ‘Jax’ and his mother, where he offered the 9-year-old a chance to walk with him to the ring once he gets better.
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Is Jaron Ennis setting a new standard for athletes by supporting young fans like Jax?
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“Keep fighting, Jaxx. Keep being strong. You know I’m here for you,” ‘Boots’ said to him. “We told him. A lot of hard work in the hospital. You would have been proud of him,” Jax’s mother informed Boots. “You can call me anytime too. Whenever you feel like you’re down or anything, you call me. I’ll go get some pizza. You get pizza and we have a pizza date over the phone.” ‘Jax’ has been to a variety of baseball games, as he said, but never to a boxing fight.
“We gotta make that happen on the next one. When I’m closer to you guys, we’re gonna make that happen, you know. Maybe he can walk out with me,” Jaron Ennis said. Surprised by the offer, ‘Jax’s’ mother said, “Oh, that would be incredible.”
“Appreciate you guys. Much love to you,” Boots said earnestly. “We love you,” came the reply from Jax’s mother. “Love you more,” added Ennis.
After the call ended, in the same clip, Ennis revealed that the call was part of his ritual which he practices every time he gets a chance to talk to Jax.
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Jaron Ennis aims to make a small change
Jax’s treatment involves extracting his T cells, which play a key role in protecting the body against infections, and then transplanting them with genetically modified cells into Jax’s body. “The hope is that those genetically modified T cells will replicate, and those replicated T cells are the ones that are going to function normally,” Missy Ramirez explained.
It will be an arduous journey for Jax and his family, so Boots hopes to make the kid’s life a little better by being involved in his life and treatment from time to time. “I’ll talk to him here and there, just check on him, make sure [he’s] okay. See how [he’s] feeling, things like that… I’m just grateful to be able to make his day by calling him. That could just change a lot,” Jaron Ennis stated.
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That being said, as Jaron Ennis enters the ring today, he will not only fight for his belt but also set an example for ‘Jax’ to fight his rare disease. Everyone from EssentiallySports sends ‘Jax’ and his family best wishes. What did you think of Jaron Ennis’ generous offer?
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Is Jaron Ennis setting a new standard for athletes by supporting young fans like Jax?