Dancing in the Storm
by Amie Darnell Specht (Author)
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.
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Publishers Weekly
Seventh grader Kate, who lives in Baton Rouge, has her hands full competing in gymnastics, navigating friend politics, and nursing a crush on her older brother's best friend. Things get complicated further when shoulder pain after a gymnastics meet leads to a diagnosis of fibrodysplasia ossificans progressiva, a rare genetic disorder that causes muscle and ligaments to become bone. Learning that stress, illness, or falls can cause flare-ups prompts Kate's parents to pull her from gymnastics. As she struggles adapting to new life restrictions and the loss of her passion, Kate fears she will be perceived as different and worries about a future with decreasing mobility. While Kate's family is supportive--they replace their trampoline with an FOP-safe pool and consistently validate her frustrations--it's Amie, Kate's 35-year-old mentor with FOP, who helps her process her feelings. In this empathetic novel of loss, resilience, and joy, Hitchcock (One True Way) and debut author Specht deftly balance Kate's diagnosis with middle school drama, creating a deeply relatable telling in which community support and an openness to change lead to Kate's hopeful visions of a brighter future. Kate's dealings with FOP are candidly informed by Specht, who has FOP, according to an author's note. Kate and Amie present as white. Ages 8-12. (Feb.)
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JUV039150 - Juvenile Fiction | Social Themes | Special Needs
JUV032200 - Juvenile Fiction | Sports & Recreation | Gymnastics
