June 2010 – Nicky and his little brother Connor at Camp. Nicky was having one of those “corneal abrasions” we totally despise. As I write this he’s having another one. That’s when he somehow scratches his eye and it’s extremely painful and it takes a few days to heal. When he was little he would spend the first day in the dark, but as he got older he tried to just live through the day, with the help of strong pain meds. His form of EB (Recessive Dystrophic) effects not only his outer skin, but all mucosal membranes, such as his eyes, mouth, throat and esophagus. Sometimes an eyelash gets stuck in the eye and causes the abrasion, other is a slight scratch or when it gets dry after a night’s sleep. Even with all the excruciating open wounds he has, he hates the corneal abrasions the most. It sucks for me too because I have a really hard time taking care of him and changing bandages in the dark. We hate EB.
More of Nicky’s story in the book… Thank you so much for your support!!
Love & Light,