New Mexico rallying behind 7-year-old boy battling rare genetic disorder

People in New Mexico are spreading the word to help a 7-year-old boy fighting a rare genetic disorder.Jackson Ramirez, commonly known as Jax, was diagnosed with IPEX in October 2021. The syndrome is characterized by the development of multiple autoimmune diseases in affected people. “It’s sort of a super, autoimmune bug,” Missy Ramirez, Jax’s mother, said. “His body is always working in overdrive creating autoimmune disorders against every organ in his body.”The condition is extremely rare, affecting one in 1.6 million people.Jax is in need of a bone marrow transplant to cure him of the life-threatening disorder. Currently, there are no matches for him on the Be The Match Registry out of the 31 million people registered.”IPEX is fatal. I will lose him if I do not find a match,” Ramirez said.Since his diagnosis, Jax’s family has been hosting dozens of drives around the country to find his match.Over 3,000 people have registered as donors for Jax’s cause so far.”That means that there are people listening and there are people wanting to save somebody’s life. That gives me hope,” Ramirez said. “That really gives me the feeling that tomorrow is going to be a new day, and maybe, I’ll get that call that he has a life-saving donor.”New Mexico’s first drive for Jax was held Sunday at the YHWH Health and Fitness Studio in Albuquerque. “We’re trying to build a community, and with that is to help people,” Rosemary Pagliaro, one of the organizers, said. “That’s all about health and wellness, is just to help people. So was no question.”Jax is of Mexican descent. With the overall lack of Hispanic donors nationwide, his chances of getting a match are even low compared to those who are white. “He does not have a very high chance. It’s 46% to find a match ever,” Aryn Miles, an organizer and friend of Ramirez, said.However, the statistic isn’t stopping people in New Mexico from stepping up and registering as donors.”I didn’t choose to live until I was 40, I was lucky enough. I think everyone in life should have that opportunity. No child should have their life end at such a young age,” Levi Rugg, who attended the event, said. All in hopes of giving one family a chance at a brighter future.”That really gives me the feeling that tomorrow is going to be a new day,” Ramirez said. “Maybe I’ll get that call that he has a life-saving donor.”People between the ages of 18-40 are eligible to become donors.Event organizers also have 300 swab kits available for those interested to help Jax find a match. If you’re unable to attend, text ‘Hope4Jax’ to 61474 or visit Be the Match website here.

People in New Mexico are spreading the word to help a 7-year-old boy fighting a rare genetic disorder.

be the match for jax

Hearst OwnedMissy Ramirez

Pictured: Jackson, ’Jax’, Ramirez

Jackson Ramirez, commonly known as Jax, was diagnosed with IPEX in October 2021. The syndrome is characterized by the development of multiple autoimmune diseases in affected people.

“It’s sort of a super, autoimmune bug,” Missy Ramirez, Jax’s mother, said. “His body is always working in overdrive creating autoimmune disorders against every organ in his body.”

The condition is extremely rare, affecting one in 1.6 million people.

be the match for jax

Hearst OwnedMissy Ramirez

Jax is in need of a bone marrow transplant to cure him of the life-threatening disorder. Currently, there are no matches for him on the Be The Match Registry out of the 31 million people registered.

“IPEX is fatal. I will lose him if I do not find a match,” Ramirez said.

be the match for jax

Hearst OwnedMissy Ramirez

Since his diagnosis, Jax’s family has been hosting dozens of drives around the country to find his match.

Over 3,000 people have registered as donors for Jax’s cause so far.

“That means that there are people listening and there are people wanting to save somebody’s life. That gives me hope,” Ramirez said. “That really gives me the feeling that tomorrow is going to be a new day, and maybe, I’ll get that call that he has a life-saving donor.”

New Mexico’s first drive for Jax was held Sunday at the YHWH Health and Fitness Studio in Albuquerque.

“We’re trying to build a community, and with that is to help people,” Rosemary Pagliaro, one of the organizers, said. “That’s all about health and wellness, is just to help people. So [holding this event] was no question.”

be the match for jax

Hearst OwnedMissy Ramirez

Jax is of Mexican descent. With the overall lack of Hispanic donors nationwide, his chances of getting a match are even low compared to those who are white.

“He does not have a very high chance. It’s 46% to find a match ever,” Aryn Miles, an organizer and friend of Ramirez, said.

However, the statistic isn’t stopping people in New Mexico from stepping up and registering as donors.

“I didn’t choose to live until I was 40, I was lucky enough. I think everyone in life should have that opportunity. No child should have their life end at such a young age,” Levi Rugg, who attended the event, said.

be the match for jax

Hearst OwnedMissy Ramirez

All in hopes of giving one family a chance at a brighter future.

“That really gives me the feeling that tomorrow is going to be a new day,” Ramirez said. “Maybe I’ll get that call that he has a life-saving donor.”

People between the ages of 18-40 are eligible to become donors.

Event organizers also have 300 swab kits available for those interested to help Jax find a match.

be the match for jax

Hearst OwnedMissy Ramirez

If you’re unable to attend, text ‘Hope4Jax’ to 61474 or visit Be the Match website here.

https://www.koat.com/article/be-the-match-for-jax/39548568