“Your baby has immune dysregulation, polyendocrinopathy, enteropathy, X-linked (IPEX) syndrome,” the geneticist said, adding, “If he doesn’t receive a successful bone marrow transplant before the age of two, he will most likely not survive.” His parents were stunned. “Wow, what do you do with that? Just staring at that little bundle of joy you have, how can he be so little and so sick?”
IPEX is a rare autoimmune disease that only affects boys, and the only cure is a bone marrow transplant. Lee’s family did what they always do, and took the next step to save their baby’s life. They checked him into St. Louis Children’s Hospital, where Lee was fitted with a feeding tube, IV port, insulin pump, and a Dexcom monitor to keep track of his blood sugar 24/7. Then, they got down to business preparing for the transplant.