Alisha & Kayson - Rockwell, NC - 2023
This little guy made me so proud of him. I’m proud of him every day, but today he made me realize that we must be doing something right on the parenting front. After stopping at Sonic to pick up a grilled cheese sandwich and a cherry slushy with real cherries, we were getting things settled at the table and he says, “ So people keep asking me why my skin is like this.” Immediately I get ready to go on the defensive, because that’s just rude, but Kayson says “Yeah. And I just tell them, I was born this way,” with all the confidence you can imagine. I said, “You do?!” And he says, “Yeah. I kinda like it.” I said what’s that? And this bigger than life little boy smiles and says, “I like that I’m different and not like everyone else.”
Y’all my heart swole with pride in that moment. As worried as I am that someone is going to steal this amazing fire this boy has, it seems I’ve been worried for nothing. At 6 years old, he’s already accomplished something many of us never do. He’s comfortable in his own skin and doesn’t mind that he’s different.
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.