Dancing in the Storm - by Amie Darnell Specht & Shannon Hitchcock

About the Book

"Twelve-year-old Kate's idyllic life in Baton Rouge takes a drastic turn when a mysterious shoulder pain reveals she has Fibrodysplasia Ossificans Progressiva, a rare genetic disorders, challenging her to adapt with support from loved ones and a pen pal, Amie, who shares her experience with FOP"--

Book Synopsis

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.

Review Quotes

"Kate's fear, loss, and anger are vividlyportrayed, and others' awkward or ableist reactions ring painfully true." --Kirkus Review

"In this empathetic novel of loss, resilience, and joy, Shannon Hitchcock and Amie Darnell Specht deftly balance Kate's diagnosis with middle school drama, creating a deeply relatable telling in which community support and anopenness to change lead to Kate's hopeful visions of a brighter future."
--Publishers Weekly

About the Author

Amie Darnell Specht works in tech support for a large computer company. She and her husband live in North Carolina with their many pets. She has Fibrodysplasia Ossificans Progressiva (FOP), one of the rarest genetic disorders in the world, and this, her first novel, is heavily influenced by her own story.

Shannon Hitchcock was born and still lives in North Carolina and grew up in the foothills of the Blue Ridge Mountains. She is the author of four previous middle-grade novels, and her acclaimed books have been featured on many state award lists.