Extraordinary! A Book for Children with Rare Diseases

What makes a child with a rare disease extraordinary?

Explore the answer to this question while sharing 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. Family members and caregivers are invited to share in this conversation and to customize the reading according to each young reader's developmental needs.

The gentle lessons draw on the co-author's firsthand experience of growing up with an ultra-rare genetic disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways. Extraordinary is intended to celebrate the diversity and beauty inherent in all children around the world.

Accompanied by sensitive yet realistic, multicultural 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.