Available in hardcover and paperback. Now in five languages!

What makes a child with a rare disease extraordinary?
Enjoy an illustrated conversation with Evren Ayik about what he has learned while growing up with his own rare disease.
Available in hardcover and paperback. Now in five languages!
Enjoy an illustrated conversation with Evren Ayik about what he has learned while growing up with his own rare disease.
Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease. The gentle lessons draw on the co-author's firsthand experience of growing up with an ultra-rare disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways. Family members and caregivers are invited to share in this conversation and to customize the reading according to each young reader’s developmental needs.
Accompanied by sensitive yet realistic illustrations created by award-winning artist and children’s book illustrator Ian Dale, the heartfelt messages introduced in Extraordinary! are intended to uplift and encourage any children living with rare diseases to live their very best lives.
Evren & Kara Ayik wrote this book to uplift children with rare diseases following Evren’s graduation from high school. Evren’s advocacy work for people with ASMD began in 2017 when he was invited to speak at the FDA in Maryland. He went on to speak to audiences in several other states about life with ASMD to raise awareness of and support for treatments for rare diseases. In 2019, he earned the rank of Eagle Scout and was a California Boy’s State delegate in Sacramento. Evren is also the winner of the prestigious TORCH Award for rare disease advocacy from Sanofi Genzyme. He plans to become a special education teacher and now attends California State University, Fresno. His mother, Kara, has been an educator for over twenty years and believes that children must cultivate true self-worth and values to help them navigate their journeys through life. Her greatest joy and proudest accomplishment have been raising her two sons, Evren and Erol. Above all, Evren and Kara seek to promote compassion and respect for children with rare diseases and special needs.
Ian Dale explores how visual art can amplify the stories of those less visible among us. He frequently illustrates for non-profit and faith-based organizations and publishers, and his work has been available to kids around the world. Ian lives in Southern California with his wife and two young children.
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
I started reading this book to my daughter when she was two-and-a-half not knowing she would be diagnosed with Juvenile Idiopathic Arthritis one day. All I wanted her to see was that people have rare diseases and they are amazing too. Anyways, having had read this book really helped her understand that she has a rare disease and explains why she has to get shots and take so much medicine. She even said one night, “I have a rare disease like Evren.” Thank you for writing such a meaningful book.
Schoolteacher in California
We are excited to announce translations of Extraordinary! A Book for Children with Rare Diseases in a growing number of languages. The book is available in German, Mandarin Chinese, Portuguese, and Spanish. Children will benefit from reading our book in their native language so that their abilities to connect with their feelings aren't hindered by the intellectual effort needed for reading in a foreign or secondary language. We look forward to offering the book in additional languages in the near future.
Chinese Edition
Email us to order a paperback copy
German Edition
Außergewöhnlich! Ein Buch für Kinder mit seltenen Krankheiten
Portuguese Edition
Extraordinário! Um Livro para Crianças com Doenças Raras
Spanish Editions (Spain & Hispanoamerica)
Spain: ¡Extraordinario! Una historia para niños con enfermedades raras (España)
Hispanoamerica: Coming soon!
Please contact us if you'd like to request a new translation, or if you'd like to help make one possible.
Insights for reading the book Extraordinary! to children without rare diseases. By Kara Ayik, educator, parent and co-author of Extraordinary! A Book for Children with Rare Diseases.
A video presentation by Kara Ayik, educator, parent and co-author of Extraordinary! A Book for Children with Rare Diseases.
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© 2021 Evren & Kara Ayik. All rights reserved.