It can be challenging to live with a rare disorder. The following books each have a mission of inspiration, strength, and education in the realm of congenital bowel/bladder disorders. In honor of Rare Disease Day, I encourage you to support and advocate for each other and consider reading these inspiring stories. All of these books can be found through a google search.
Journey to Japan: A Life Saving Memoir: A Story of Compassion and Perseverance
Follow the author and her family as they navigate the challenges that come along with establishing and seeking the right medical care for their child while living in a new country.
The 5000th Baby: A Parent’s Perspective and Journey through the first year of life
This book takes you through the amazing journey of a family and their experience learning about a rare disorder and seeking out the right care through their child’s first year of life.
Oscar the Unstoppable
This children’s book follows the story of a little boy with a rare disease and gives inspiration to readers that you can do anything!
RARE AND RESILIENT
A compilation of personal experiences in living with a chronic bowel condition.
The Adventures of sneaky the poop
Enjoy this story about two babies born a world apart with a similar condition.
My Little Brother Has Hirschsprung Disease
A true story told from the perspective of an older brother.
