Children's Books About Rare Disease
* This image uses the old name of the ‘Is There a Book for That?’ blog/book list.
Traditional publishing rewards books that would be appropriate for a large amount of kids (publishers only want the book if it is going to get a lot of sales!). So for a long time, there weren't books about rare diseases. Luckily in the last 5 years, writers have found ways to make books about rare disease available. I am sharing 5 today, and I hope to share more very soon (I just need to get my hands on some of these books!).
For today, I sharing a variety of rare disease books. One about several different rare diseases, one about rare disease in general, one story book that just happens to have a main character with a rare disease, and two books about specific rare diseases. Also, if you have a child with a rare disease or work with these keep in mind that there are likely other books on the list that could be helpful. After you read about the books below, go back to the main "blog" page and scroll down. There are resources on limb differences, surgery, eating/g-tubes, inclusion and other topics that might be helpful for you and the children in your world.
Rare Disease from A to Z by Hailey Adkisson
This book starts by explaining disease and differences between different diseases including onset, cause, and treatment. Then this book chooses 26 disease and gives a page explanation of each. While this doesn’t even start to explain all of the rare diseases, it can help normalize differences and help kids feel connected to other experiencing a rare disease. This book could be great for siblings or peers who have interest in understanding differences. There are some bigger words that would likely need to be explained. Good for elementary age.
https://amzn.to/3X2OA1p
Extraordinary! A Book for Children with Rare Disease by Evren Ayik and Kara Ayik
This book talks about different aspects of rare disease including the aspects of identity, inclusion, and self-belief. It talks about things that children with rare diseases might use to help their bodies. It helps kids find connection to others who also deal with a rare disease. Without listing off specific rare diseases, this book unites them by their similar genetic component and helps the reader connect to the entire rare disease community. This book is written for children, but it uses some more advanced concepts. So I would think this book would be good for middle elementary through middle school. The book would be great for classrooms especially if there was a child who had a rare disease
.https://amzn.to/3LLJc0e
Dancing with Daddy by Anitra Schulte
This book is about a girl who has Wolf-Hirschhorn Syndrome (WHS) and plans on going to the dance with her dad. She shops for a dress and anticipation builds. She is worried the snow storm will cancel the dance, but it doesn’t. The intro to this story shares more about WHS, but for the most part, this girl represents any child who is in a wheel chair, is tube fed, and communicates with a PODD book. This story is relatable to any child especially those who love to dance and love their daddy, especially young children through middle elementary.
https://amzn.to/48kIEXV
Bendy Bones and Stretchy Skin by Pey Carter and Abigail Bailey
This is a story about a girl with Ehlers-Danlos Syndrome. Her mom also has the syndrome. She is feeling frustrated about the questions that kids ask at school and comes up with an idea - she and her mom will do a presentation for her class. They speak about collagen and the extra stretchiness in her joints that makes her more prone to injuries. After the presentation, her classmates are more helpful and the girl feels better. This book would be good for preschool - middle elementary, especially for those with EDS or who have someone with EDS in their life.
https://amzn.to/3K9fvFU
Elsie with the Great Smile by Kristen Cagadas
This book talks about Elsie, a girl with Williams Syndrome. It talks about the things she likes and the things she’s good at. It also talks about things she needs more help with and the unique way her body works because of her Williams Syndrome. This book does a nice job of explaining things in easy language. It does rhyme throughout which helps with flow, but maybe limits some of the explanations. This book would be great for a child with Williams, their siblings and their peers. This book should be partnered with a conversation about the child they know is the same or different as Elsie, as some of the details could be different in each child. Great for preschool through young elementary.
https://amzn.to/44h5tJD
(I am adding links to all of the books to help you all easily find and purchase. I do receive a small commission, but it doesn't cost you any more and it doesn't take anything away from the author. It's just Amazon that makes a little less per purchase. :) This helps me justify spending time in my week finding more great books for you!)
