About the Book
Extraordinary! A Book 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.