I’m Jylana Thomas, wife to one pretty great husband who is awesome at picking up my slack when ever he can. I’m also a mom to 4 wonderfully unique with their own individual talents, children. Two of which happen to have SEPN1, a rare form of Congenital Muscular Dystrophy. This is a small glimpse into our life filled with days of joy as well as the struggles we face learning to navigate through the diagnosis of SEPN1.