To the casual observer, one-year-old Thor Uran is a happy, healthy toddler with a winning smile and a shock of blond hair fitting for his super-heroic namesake.
But Thor’s parents Justine and Dustin know that Thor is locked in a struggle with an invisible but deadly supervillain: CGD.
Chronic granulomatous disease (CGD) is one of a series of inherited immune system disorders, known collectively as Primary Immune Deficiency diseases (PID).
PIDs are the result of mutated genes that interfere with the immune system’s ability to fight infections. Individual PIDs affect the immune system in different ways—in the case of CGD, the body is more prone to infections caused by fungi or bacteria. In the past, CGD was almost always fatal, but today even individuals with severe cases can live longer, fuller lives thanks to advances in treatments and bone marrow transplants.
The trick, though, is finding a suitable donor. That’s the problem Thor’s parents faced: None of the donors in a national database matched their little boy. Nor did Justine—who has CGD herself—or Dustin. There was one family member who hadn’t weighed in yet, in part because there was nothing and no one to weigh: Thor’s unborn baby sister!
Last year Justine became pregnant with baby #2, and just before Christmas Thor’s parents received a mind-blowing Christmas present when prenatal testing revealed the baby is a match for her big brother. Doctors can collect the baby’s umbilical cord blood and use it for the bone marrow transplant.
Thor’s parents are overjoyed, but know their son has a long road ahead of him. Bone marrow transplants and the accompanying chemo are tough enough for adults to endure, let alone a toddler. But between the twin gifts of a new baby and a new shot at life for their son, the Urans have reason to celebrate and reason to believe the small but mighty Thor will vanquish his arch-nemesis once and for all!