I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest of them get me over the edge. That’s where my Italian psychotic bitch shows up, and let me tell you, I love her. Of course, being such a rare disease even in a large population area, there are very few people I can rely on, because there is certainly nobody around here with experience with EB. Normally the best resources are other parents, I have at least one mom on speed-dial who is also my best friend. Even with such support, Epidermolysis Bullosa is very different with each patient, and the care has to be customized through a lot ofRead More →