Parents of children with Moebius syndrome may benefit from learning fro the perspective of other parents and caregivers of children with similar conditions and serious illnesses. Below are a few books to consider adding to your reading list. Also be sure to check out the sections on books for children and books for adults with Moebius syndrome for more reading ideas.
by Emily Ladau
Ten Speed Press, 2021
A friendly primer on how to appropriately think, talk, and ask about disability, written by an author with a disability herself. Selected by both NPR and Booklist as one of the best books of the year.
By Magdalena Newman with Hilary Liftin
These two new books add to the small number of books that exist about craniofacial conditions. Normal, A Mother and Her Beautiful Son was written by Nathaniel’s mother about their family’s journey with Nathaniel who was born with Treacher Collins syndrome with severe symptoms. Normal, One Kid’s Extraordinary Journey was written by Nathaniel and his mother and contains some (humorous) illustrations. They tell the same story, one for adults and the other for younger readers. The target audience is ages 9 to 12; though a younger child with a craniofacial condition and familiar with surgeries could also be interested in Nathaniel’s book, either reading it or having it read to them.
The author chronicles their family’s extraordinary situation in which serious health crises occurred often. Some examples include their experiences dealing with many high-risk surgeries and the constraints of both a gastrostomy and tracheostomy tube since Nathaniel’s infancy and many high risk surgeries. This is while she herself has a second child, cancer and a recurrence, many moves to different states and frequent job changes for Nathaniel’s father. Despite these uncommon and difficult challenges, the family is resilient, upbeat, and thankful; they retain a sense of humor, especially Nathaniel. Of special interest is how the book and then the movie of Wonder positively affected Nathaniel and the family. Nathaniel explains how wonderful the family’s dogs are, how he usually appreciates having his brother, and that he doesn’t feel defined by Treacher Collins.
Mousumi Bose, Ph.D., Kimberly Haugstad, MBA; and Theresa J. Smith, AS, LPN, CCRC
Covering nearly 100 topics related to caregiving, this guidebook is intended to help caregivers navigate the challenges of rare and serious medical conditions. Created by Global Genes and the National Alliance for Caregiving.
By Rachel Callander
Mary Egan Publishing, 2015
This is an award-winning book featuring beautiful photography of many children with genetic conditions along with descriptions of the children by their parents and the book’s author. It celebrates all the children and was inspired by the author’s daughter’s life. Find the TedXAuckland talk by Rachel Callander on the book’s website.
By KiOwana E. Phillips
This is a story about a mother with a son born with Moebius syndrome among other medical issues. The book takes you through the first nine years of his life, experiencing many emotions as you read. Each page will leave you wanting more. Take a journey through the eyes of this mother as she tells you about the boy who smiles with his heart. The author, KiOwana Phillips, is on the board of the Moebius Syndrome Foundation.
By Andrew Solomon
Solomon is an LGBT author who set out to understand his own complicated relationship with his father. As he does so, he interviews families and parents with children who are “far from the tree,” that is, different from their parents in some manner. An all-encompassing book that traverses deaf culture, Down syndrome, autism, LGBT communities, and more, this book helps parents understand the range of reactions they can have to a child who is different. Readers may walk away with a better understanding of their approach to parenting a child with a disability or difference.
by Hope Charkins
Woodbine House, 1996
This book is out of print but may still be found on Amazon and in some libraries. The book was written to help parents cope with the diagnosis of a child with a facial difference and includes some contributions by parents of children with Moebius syndrome.