Available now in hardcover and paperback!
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.
Written for children with rare diseases
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.
Sensitive and uplifting approach
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.
About the Creators
Written by Evren & Kara Ayik
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.
Illustrated by Ian Dale
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.
Learn more about ASMD
You can learn more about Evren's rare disease, Acid Sphingomyelinase Deficiency (ASMD), by visiting the National Niemann Pick Disease Foundation.
Translations
Now available in German!
We are excited to announce that our first translation of Extraordinary! A Book for Children with Rare Diseases, is now published! The book is now available in German. 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.
Find the German Edition on Amazon:
Außergewöhnlich! Ein Buch für Kinder mit seltenen Krankheiten
Please contact us if you'd like to request a new translation, or if you'd like to help make one possible.
