Madison waited four years to meet her baby boy, Jaxon. He was born big, healthy, and perfect—9 lbs. 2 oz. of joy. There was no sign that anything was wrong.
But a call came just days later. Georgia’s newborn screening revealed something heartbreaking: Jaxon had Krabbe disease, a rare and fatal genetic disorder that affects the nervous system. The only hope for treatment? A bone marrow transplant before symptoms appear. Jaxon barely made the cutoff.
His journey was just beginning.
Madison and her husband rushed from Augusta to Atlanta, where Jaxon began chemotherapy and then received his transplant at just one month old. He fought through every challenge—hair loss, painful sores, complications from treatment, and a stay in the PICU. Through it all, Madison was by his side, holding him, comforting him, and reminding him he was loved.
There were small signs of hope—Jaxon opening his eyes again after a week in a coma—but also heartbreak after heartbreak. On October 20, after a sudden internal bleed caused by a catheter complication during dialysis, Jaxon passed away in the arms of those who loved him most.
He was just 7 weeks old.
“He was a very happy baby,” Madison told me. “He rarely cried—unless he was hungry or getting his vitals taken. We were so lucky.”
Now, Madison shares Jaxon’s story to raise awareness about Krabbe disease and the importance of newborn screening. Only 12 states—including Georgia—currently test for it. Without early detection, families never get the chance at treatment.
Jaxon’s life was brief, but his impact is lasting. His story is a reminder of how fragile—and how fierce—life can be.
