Tag: DEBRA America

if I could choose…

  Epidermolysis Bullosa (EB) is a group of inherited skin disorders. The last week of October every year is EB Awareness Week.  Since it is known as “The Worst Disease You Never Heard Of”, we choose to share bits and pieces of our life with our butterfly, Julianne.  She is a gift to us from …

an identity worth having {EB Awareness Week}

EB is not who she is. She just happens to have EB. Who is she? She’s a daughter, a friend, a sister. She’s a granddaughter, a niece, a cousin. She’s sassy, funny, and never meets a stranger. She’s fearfully and wonderfully made.  Exactly how she is. “Fearfully and wonderfully made.”  THAT is her identity. She …