I loved this book!!! I have two daughters with rare diseases (two different rare diseases, actually), and I have been on the hunt for a book that explains the concept of rare diseases/ disorders in a simple, kid-friendly way, and this book was the answer! Extraordinary: A Book for Children with Rare Diseases addresses the idea of identity- what makes you YOU? Then it goes over the basic idea of what rare diseases are, how people may react when they learn about your diagnosis, etc.
One thing I enjoyed was that there were so many different disabilities represented! Rare diseases are just that- rare! I liked that this book could apply to any of the thousands of different disorders.
Hands down, my favorite line was “Your rare disease does not make up your entire identity." This book is SO well done, and the pictures were incredibly diverse and inclusive! 10/10!!!
Mary Mecham
Director of Disability Book Week