Paperback: Extraordinary! A Book for Children with Rare Diseases
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'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. Contact Evren & Kara.
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. Find out more about Ian.
What is ASMD?
There are three disorders known as Niemann-Pick disease, types A, B, and C. These disorders were initially grouped together because similar symptoms, but we now know that they are different diseases. NPD types A and B are due to mutations in the SMPD1 gene, which causes a deficiency of a specific enzyme, acid sphingomyelinase (ASM). NPD type C is due to mutations in one of two different genes and does not involve a deficient enzyme. NPD type C is now considered a separate disorder, distinct from Niemann-Pick disease types A and B. NORD has an individual report on NPD type C in the Rare Disease Database. ASMD is also known as acid sphingomyelinase-deficient Niemann-Pick disease.
Source: rarediseases.org
