WAITING FOR A LIFE-SAVING MATCH. JAX RAMIREZ IS A KID WITH A BUSY SCHEDULE. >> MY WORKOUT IS SPRINTING, RUNNING, OR RACING. KALEA: AND AT JUST 7 YEARS OLD, HE’S GOT BIG PLANS, TOO. >> I WANNA BE A YOUTUBE STAR. KALEA: ALL WHILE BEING A BIG BROTHER TO LINCOLN RAMIREZ. >> THEY ARE BEST FRIENDS, AND I DON’T WANT THEM TO BE TORN APART. KALEA: JAX IS LIVING WITH A RARE AUTOIMMUNE DISEASE CALLED IPEX. HE WAS DIAGNOSED IN OCTOBER 2021. THE ONLY POSSIBLE CURE IS A BONE MARROW TRANSPLANT, AND OUT OF MILLIONS OF PEOPLE REGISTERED TO DONATE, NO ONE IS A MATCH FOR JAX. >> FOR PEOPLE OF COLOR, IT’S REALLY DIFFICULT TO FIND SOMEBODY, JUST BECAUSE OF THE LACK OF DIVERSITY ON THE DONOR DRIVE. KALEA: WITH THE UNCERTAINTY OF THE DISEASE, MISSY SAYS THEY HAVE TO MOVE FAST. >> WE HAVE TO FIND A MATCH WHILE JAX IS HEALTHY, AND THAT’S PROVEN MORE DIFFICULT THAN I THOUGHT IT WOULD BE. BUT I’M NOT GOING GIVE UP HOPE. KALEA: THROUGH LIVE DONOR DRIVES AND EVENTS TO ENCOURAGE PEOPLE TO REGISTER, THE LIST OF POSSIBLE DONORS HAS GROWN BY THOUSANDS. >> OUR MISSION IS TO NOT ONLY SAVE JAX, BUT IT’S TO SAVE ALL OF THE OTHER PEOPLE. 18,000 PEOPLE TODAY ARE SEARCHING FOR THEIR PERFECT LIFESAVING MATCH. KALEA: TO REGISTER, TEXT “JAX” TO 61474, AND A SWAB KIT WILL BE SENT TO YOUR HOME YOU MIGHT NEVER MATCH WITH ANYONE IN NEED OF A BLOOD OR BONE MARROW DONOR, OR YOU MIGHT ABEBLE TO SAVE A LIFE. >> I WAKE UP EVERY DAY, AND I SEE HIM BOUNCING AROUND AND SMILING. BUT ALL IN THE BACK OF MY MIND, I KNOW THAT THAT COULD BE TAKEN AWAY FROM ME THE VERY NEXT DAY. KALEA: FOR DETAILS ON HOW TO JOIN BE THE MATCH OR GET INVOLVED WITH A LIVE DONOR EVENT LOCALLY, CLICK ON THIS STORY ON OUR
A mom’s search for 7-year-old son’s life-saving bone marrow match continues
A Butler County mom has been working to spread the word about finding a match for her 7-year-old son since October 2021, when she learned he has a rare autoimmune disease affecting just one in 1.6 million people.This Mother’s Day, Missy Ramirez shared her story of both fear and hope for her son, Jax Ramirez’ battle with IPEX. The only possible cure is a bone marrow transplant, and out of millions of people registered to donate, no one is a match for Jax.“For people of color it’s really difficult to find somebody just because of the lack of diversity on the donor drive,” Ramirez said.With the uncertainty of the disease, Missy said they have to move fast. “We have to find a match while Jax is healthy, and that’s proven more difficult than I thought it would be, but I’m not going to give up hope,” Ramirez said.Over the past 7 months, she and her family have held numerous donor drives and helped nearly 4,000 people register to become a potential donor.“Our mission is to not only save Jax, but it’s to save all of the other people. Eighteen thousand people today are searching for their perfect lifesaving match,” Ramirez said.To register, text “JAX” to 61474, and a swab kit will be sent to your home.You might never match with anyone in need of a blood or bone marrow donor, or you might be able to save a life.“I wake up every day, and I see him bouncing around and smiling, but all in the back of my mind I know that that could be taken away from me the very next day,” Ramirez said.For details about future live donor events, follow “Be the Match for Jax” on Facebook, Instagram and Tiktok.
A Butler County mom has been working to spread the word about finding a match for her 7-year-old son since October 2021, when she learned he has a rare autoimmune disease affecting just one in 1.6 million people.
This Mother’s Day, Missy Ramirez shared her story of both fear and hope for her son, Jax Ramirez’ battle with IPEX.
The only possible cure is a bone marrow transplant, and out of millions of people registered to donate, no one is a match for Jax.
“For people of color it’s really difficult to find somebody just because of the lack of diversity on the donor drive,” Ramirez said.
With the uncertainty of the disease, Missy said they have to move fast.
“We have to find a match while Jax is healthy, and that’s proven more difficult than I thought it would be, but I’m not going to give up hope,” Ramirez said.
Over the past 7 months, she and her family have held numerous donor drives and helped nearly 4,000 people register to become a potential donor.
“Our mission is to not only save Jax, but it’s to save all of the other people. Eighteen thousand people today are searching for their perfect lifesaving match,” Ramirez said.
To register, text “JAX” to 61474, and a swab kit will be sent to your home.
You might never match with anyone in need of a blood or bone marrow donor, or you might be able to save a life.
“I wake up every day, and I see him bouncing around and smiling, but all in the back of my mind I know that that could be taken away from me the very next day,” Ramirez said.
For details about future live donor events, follow “Be the Match for Jax” on Facebook, Instagram and Tiktok.
