A new book has been launched for children with osteogenesis imperfecta, commonly known as brittle bone disease.
The Dream Machine by Candace Amarante tells the story of a 16-year-old girl living with O.I. who witnesses her younger sister fracturing her leg in a downhill skiing accident.
The 122-page fictional novel is designed to help people with O.I. relate to the characters.
“I love the book. It’s absolutely amazing. It’s everything I hoped for and more,” Carter Brown, a 16-year-old who lives with O.I., told Global News at the book’s launch at the Shriners Hospitals for Children in Montreal.
Brown, who was born with 12 bone fractures, says this kind of book didn’t exist when he was growing up but it’s the kind of non-medical treatment needed to help kids who are struggling with the rare genetic bone disorder.
“This is the first time I’ve seen a book that has someone with O.I. and it makes me feel represented,” Brown said.
The author says this book is unlike anything she has ever written and involved years of research and planning.
Amarante says the target audience isn’t limited to those with O.I. — it also aims to reach people with chronic illnesses, common injuries and many others.
“Not only children at the hospital will benefit from it but children who are in school,” Amarante said.
The head researcher says there is a lack of children’s books dealing with O.I. and publishing a fictional book on the topic is long overdue.
“How do we explain in a way that a child is going to hear it and connect with it. And that’s through storytelling,” Argerie Tsimicalis, the Shriners Hospital for Children head researcher and registered nurse, told Global News.
Many Canadian children diagnosed with O.I. are treated at the Shriners Hospitals for Children in Montreal.
“There is no cure. It’s a genetic problem,” Dr. Frank Rauch, a pediatrician at the hospital, told Global News.
Rauch has seen more than 800 kids and says this book is another tool to help treat kids and its reach should extend beyond the hospital walls and into classrooms, homes and libraries.
“I think this is a direct benefit for our patients,” Rauch said.
The Dream Machine is available for online orders.
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