CONCORD, Mass. - Hirschsprung disease (HD) affects approximately one in 5,000 births, accounting for over 850 new cases every year in the US alone. Yet, the information and resources available to help the parents and families who take care of children with HD are written by medical professionals and are mostly focused on a medical audience. Husband and wife Eric and Isabelle Schnadig, whose son Adrien was born 14 years ago with HD, wrote the first children’s book to address the subject. My Little Brother Has Hirschsprung Disease is an easy-to-understand overview for families and children.
HD, named after Harald Hirschsprung, a 19th century Danish pathologist who first described the condition, is caused by the absence of ganglion cells in the colon, which results in the inability to poop normally. When left untreated, HD causes belly distension, constipation and enterocolitis, leading to life-threatening illness. Yet, when diagnosed early and correctly, kids born with HD develop and do well.
Told from the perspective of Peter, older brother to Henry who has HD, My Little Brother Has Hirschsprung Disease presents the disease in an easy to approach manner including discussions of diagnosis, surgical and other treatments, challenges of living with the disease and long-term outlook. Written for extended families, patients and care givers of all ages, the clinical nature of the information is easy to understand and supported by illustrations by Isabelle Schnadig.
“Managing HD is no small matter, and every day is filled with challenges, achievements, pains and joys” said the Schnadigs. “We hope My Little Brother Has Hirschsprung Disease will help families know what to expect with the disease. We also want them to know that given appropriate medical care, their children will live full and rich lives.”
My Little Brother Has Hirschsprung Disease can be purchased online through SDP Publishing, Amazon, Barnes and Noble and other retailers.
ABOUT THE AUTHORS— Eric and Isabelle Schnadig are a husband and wife book-writing and illustrating team. They are also the proud parents of four wonderful children: Claire, Paul, Nathalie, and Adrien, and are co-founders of REACH, a not-for-profit dedicated to research, education, and awareness for patients and families with Hirschsprung disease. They work and live in Concord, Massachusetts.
ABOUT REACH —
REACH stands for Research, Education, and Awareness for Children with Hirschsprung Disease. It is a not-for-profit organization founded in 2011 by parents and physicians committed to improving the lives of children and families with Hirschsprung disease. If you would like to learn more or help, email reachirschsprungs ( @ ) gmail dot com,
visit http://www.reachhd.org and follow the organization on Facebook at http://www.facebook.com/reachhd and Instagram at www.instagram.com/reach_hd.