Dancing in the Storm

About Dancing in the Storm

In the tradition of Out of My Mind and Rules, and inspired by the co-author’s own life, this is a heartfelt, candid, and illuminating story of a girl learning to live fully with a rare genetic disorder.

Kate’s life in Baton Rouge, full of friends and family, gymnastics and Girl Scouts, is just plain great. But then, at the age of twelve, she suddenly develops a mysterious shoulder pain that won’t go away . . . and that will change her life forever. It turns out that Kate has one of the rarest genetic disorders in the world, Fibrodysplasia Ossificans Progressiva. FOP causes bone to form in places in the body where it shouldn’t, and there’s no cure yet. Kate will need to learn how to live with this difficult new reality, helped by those close to her and by a new pen pal named Amie, who has been living with FOP for years.

Drawing upon much of Amie Specht’s own experiences with FOP, she and esteemed novelist Shannon Hitchcock have created a poignant, eye-opening, and uplifting story of finding courage and joy in the face of adversity.