We’ve no time to waste: I need your help to help 7-year-old Jackson “Jax” Ramirez — and, in the process, lots of other children, too.
Ramirez lives just outside of Pittsburgh with his mom, Missy, his dad, Peter, and his 4-year-old brother, Lincoln.
He is adorable — a cherubic child with the deepest of dimples, who loves hiking and kayaking.
He also has a rare autoimmune disorder called IPEX syndrome that is attacking his organs and needs a lifesaving bone marrow transplant. Now.
Jax, who was already dealing with Type 1 diabetes and another autoimmune disorder that’s affecting his eyesight, is on multiple medications while his parents search for a match.
His parents are doing everything they can to help their little boy — including making his isolated environment as normal and fun as possible — but his mother doesn’t mince words.
If Jax doesn’t get a bone marrow transplant, his condition is fatal.
“I think about it every day,” his mother said, her words catching in her throat. “He’s 7.”
This is where you all come in.
Even with an estimated 30 million people on registries worldwide, about 4,000 patients are searching for a match at any given time, according to Be The Match, a nonprofit organization operated by the National Marrow Donor Program.
The odds only get worse for people of color, who make up a small percentage of all donors, making it difficult to find matches that are based on DNA and heritage. And because Jax’s dad is of Mexican descent, it’s particularly hard for Jax to find a match.
The numbers tell the tale: While a white person has about a 79% chance of finding a match, Latino patients have only about a 48% chance. A Black person has a 29% chance of finding a matched donor; patients of Asian American or Pacific Islander descent have a 47% chance and Native Americans, 60%.
Experts say there are a lot of reasons that people don’t sign up for donor registries, including medical mistrust and misconceptions about bone marrow transplants that mostly boil down to fear.
So, here’s some information that I hope motivates more people to sign up. Testing is as easy as swabbing the inside of your cheek. Online registration takes about 10 minutes; completing and returning a cheek swab kit takes even less time. If you’re called to donate, the process takes about 20-30 hours over four to six weeks. There’s no cost to donors — everything from testing fees to travel is covered. Many believe the only way to donate blood stem cells is surgically, but the majority of donations are peripheral blood stem cells, which doesn’t involve surgery. It’s a process that’s similar to giving blood, said Ronald Francois, a Be The Match account manager who covers Pennsylvania, New Jersey, and Delaware.
Jax’s parents are desperate but determined; that much was clear when I talked to his mom, a school psychologist for the Pine-Richland School District. They have held countless events to raise awareness and increase donors, and have reached out to everyone they can think of, including the second lady of Pennsylvania, Gisele Fetterman, to help spread the word.
“Just to think of what that desperation must feel like, to know that someone can save your child and you have to find that person,” Fetterman told me in a phone interview. “My heart was just really devastated thinking what that would be like to be in that situation.” Fetterman, a native of Brazil, said the dearth of donors for Jax was especially troubling to her as a Latina. She’s scheduled a call with the lieutenant governor of Florida, Jeanette Nuñez, which has a large Latino population, in hopes of getting her help.
But here’s the thing — Florida isn’t the only place with a large Latino population. About 15% of Philadelphia’s population is also of Latino descent. So, I’m calling on you, Philly.
Scan the QR code above to get a kit in the mail — and return it. (Too many people don’t.) Text “JAX” to 61474, or visit the Be The Match website to learn more about how you can help.
Anyone aged 18-40 can be a donor, but there is plenty a person of any age can do, including sharing Jax’s story or hosting registry drives in his name.
His mother has about 30 events planned between now and the end of March, but she’s looking to connect with any Philly-area organization willing to help — including, she hopes, breweries, which she said attract a large and wide array of people.
Email her at firstname.lastname@example.org.
So consider this a call to action on behalf of a 7-year-old and his family. But also all the other Jaxes out there. This column is a plea for them, too.
Because while I started the column saying I need your help to help Jax — and I do — by helping Jax, we’re also potentially helping countless others who are also looking for a match.
That happens to be a key goal for Jax’s mother, who’s made increasing the number of people of color on donor registries her personal mission. “Everyone,” Missy Ramirez said, “deserves the same chance at life.”