Kristin

Have you ever eaten way too much and gained a few pounds? Or come across a child unwilling to eat their vegetables or are just too picky about their food? I have two words to say…“I WISH!”

Recessive Dystrophic Epidermolysis Bullosa (RDEB) is a relentless disease that does not stop at just compromising the skin. Sadly, it also affects mucosal membranes like the mouth, throat and esophagus which makes eating and EVEN drinking a chore. Eating is a distant memory for me as well as the anticipation of savoring my mom’s dinners, as the delicious aroma fills the house.

Food has always been an important part of my life. As a baby, an eye dropper was often used because sucking was just too painful for my raw, blistered tongue and mouth. As a young girl, I remember sitting for hours on the couch with my mom playing the tasting game. Wiling away the time when stricken with corneal abrasions, delighting in sampling the tiny morsels of food that she took the time to prepare and arrange. The g-tube saved my life at age nine weighing in at 42 pounds but swallowing struggles progressed. Who ever thought that a pureed breaded pork chop, [...] continue the story