Seven years ago, Jon and Alicia Langenhop learned that all three of their children suffered from the same devastating, one-in-a-million genetic disorder. The constant, life-threatening infections and rashes that began weeks after each child’s birth, emergency room visits and hospital stays — accompanied by exorbitant bills — now had an explanation: severe leukocyte adhesion deficiency-I. But it wasn’t until they found an investigational gene therapy trial at UCLA that they had any hope their young family could beat the deadly odds of the disease.
https://www.uclahealth.org/news/article/night-and-day-adventuring-through-childhood-with-newfound