‘Behind These Hands,’ a Novel-in-Verse, Illustrates Affects of Batten Disease Diagnosis
The story behind the book is based on an experience Phillips lived as a third-grade teacher, when a young boy started stumbling and losing his sight. One day, Linda received the news from the boy’s parents that he had been diagnosed with Batten disease, a rare and fatal neurodegenerative disorder.
Later, she learned the boy’s brother, only two years younger, also was diagnosed with Batten disease, and that a third-grade girl from another school also had received the same diagnosis.
“Those stories just touched my heart,” Phillips said in a press release. “I wrote “Behind These Hands” as a fictional story about a young girl, a piano prodigy, who struggles to reconcile the joy that music brings to her life while her little brothers succumb to an early and ugly death.”
This devastating feeling changes when Claire, the 14-year-old protagonist of the story, meets a centenarian with an exceptional musical past with only one regret in life.
“I wanted to highlight the celebration of life for families when they realize that the clock is ticking. I hope “Behind These Hands” speaks to the children and their families who are dealing with rare disease,” Phillips said.
Kirkus Review, a website dedicated to book reviews and recommendations, praises the book as “a richly woven, unforgettable symphony of feeling and words,” while the story brings “awareness with sensitivity and grace to a rare, always fatal disease.”
Her first book, “Crazy,” tells a story set in the 1960s about a teenage girl who struggles with her mother’s bipolar disorder. That novel is a multiple award-winner, including the 2014 INDIEFAB Best Children’s Book of the Year, New York Public Library Best Books for Teens 2014, and Gold Winner of Young Adult Fiction, among others.
Both books are based on real-life events and written as novels-in-verse.