Children’s Books and Resources: For Children, Siblings, Friends and Families Living With Rare Conditions
Living with a rare condition like Loeys-Dietz syndrome can bring a lot of questions, emotions, and unfamiliar experiences for children, siblings, friends, and caregivers alike. Stories can be a powerful way to help kids understand what’s happening, feel less alone, and build confidence through medical care and everyday life.
This collection of children’s books has been thoughtfully curated to support families navigating hospital visits, chronic or rare conditions, visible differences, big feelings, and resilience. While these books are not condition-specific medical guidance, they offer comfort, understanding, and language for conversations that can sometimes feel hard to start.
Understanding Rare, Chronic & Medical Conditions
Ariana Rose: A Story of Courage
Follow Ariana Rose on a trip to the doctor and back to school as she uses a positive attitude to cope with her health condition. Ariana Rose: A Story of Courage is a helpful resource for parents, educators, counselors, and health care professionals. The story strives to promote understanding for children facing medical challenges, their siblings, and their friends.
Extraordinary! A Book for Children with Rare Diseases
What makes a child with a rare disease extraordinary? Explore the answer to this question while sharing an illustrated conversation with Evren Ayik about what he has learned while growing up with his own rare disease. The gentle lessons draw on the co-author's firsthand experience of growing up with an ultra-rare genetic disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways.
A Kids Book About Chronic Illness
This book was made to help kids aged 5-9 understand what having a chronic illness means, and how those with a chronic illness can deal with this experience. The author – who has a chronic illness herself – shows us that with some practice and determination, it is possible to tackle challenges, find new passions, and pursue things that empower you and fill your life with joy.
Little Tree: A Story for Children with Serious Medical Problems
A story about a tree that loses some of its branches during a storm and its journey to healing both physically and emotionally. This book is recommended for children who have experienced life-changing illnesses or accidents by providing comfort, inspiration and an inner sense of well-being. Ages 4-8
Hospital Visits, Tests & Procedures
The Berenstain Bears: Hospital Friends
The Berenstain Bears take a trip to the hospital and get a special tour! While Brother and Sister Bear see all the amazing things that happen in the hospital, they make new friends along the way! Young readers will learn about doctors, nurses, patients, and more in this fun and informative 8x8 storybook.
Cooper Gets a CT Scan
When Cooper falls and hits his head, his doctor wants him to have a CT scan to make sure everything is OK. This book does a great job at explaining what a CT scan is and the different things that kids will see and feel and may be asked to do during the scan. This would be good for imaging prep.
I Am a V.I.P. (Very Important Patient)
This is an activity book focused on helping children or young teen with hospital stay. Helps kids develop rapport with hospital staff through engaging activities. Supports honest communication and insightfulness. Recommended for ages 5-12.
My First Hospital Visit
Mindy, and her classmates, are working on a project for school, and are visiting a hospital. A representative from the hospital, helps them explore the many (common) areas that a hospital has, and along the way, Mindy and her friends meet many of the staff; from Child Life Specialists, to a Surgeon and Phlebotomist, and even get to see some children/patients in a playroom.
Tubes in My Ears: My Trip to the Hospital
This book tells the story from the perspective of a young boy named Luke who’s getting ear tubes. Luke talks about having vital signs taken, receiving anesthesia, and recovering from a surgery while sharing his feelings of the process throughout.
Zip-Line
A rhyming story about a young girl who had heart surgery. She tells the story of how she got the scar on her chest and how she isn’t any different from anyone else.
Learning About the Body & Health
The Bugabees: Friends with Food Allergies
This book tells the story of eight best buggy friends and the different food challenges they face on a daily basis.
The Little Encyclopedia of the Human Body
A child-friendly reference for curious kids who want to understand how their bodies work. Recommended for ages 9+
Peony's Peanut Allergy
Peony's doctor comes to her class to teach her classmates about peanut allergies and why they can be so dangerous. This book does a great job of explaining what an allergy is, why it can be so dangerous, and how we can help children who have them.
Siblings & Family Support
My Brother Needs an Operation
This interactive story explains some of the normal reactions of a sibling of a hospitalized child. Throughout this story the author asks question to the person reading it and offers helpful tips for parents.
Sometimes
Together Toby and his sister Clemmie can conquer anything — even the scary hospital — with the right attitude and a dose of fun. This is a positive and light-hearted book that encourages imagination and sibling relationships in order to help children be brave in the hospital and throughout life
Differences, Inclusion & Self-Acceptance
It's Okay to Be Different
This book teaches children important messages such as acceptance, understanding, and having confidence in themselves. With its bright colors and silly pictures, it encourages children to celebrate individuality and respect differences.
Luna and the Big Blur
A sweet story about self-acceptance and embracing tools that help our bodies work their best.
My Back Brace and Me
Children who just started wearing a back brace, or soon will be, can benefit from reading this book which helps boost self-esteem and details activities a patient can still enjoy while using the brace.
Spaghetti in a Hot Dog Bun
Lucy is taught that while everyone is different, everyone has a heart with feelings. Even when she is made fun of, she treats others how she wants to be treated.
We're All Wonders
Some people look different, and people can only notice those differences. But there are lots of people who have differences, and that makes us all wonders.
We're Different. We're the Same. And We're All Wonderful
This book helps to point out all of the parts of us that can be different, but also shows us how they are the same.
Feelings, Courage & Coping
Alexander and the Terrible, Horrible, No Good, Very Bad Day
A classic story that validates frustration and reminds kids that hard days happen—and pass.
All Feelings Are OK: It's What You Do With Them That Counts
An interactive workbook that teaches children that all feelings are okay, and choices matter.
Bravery Soup
A gentle story about fear, courage, and finding bravery in small, meaningful ways.
Double-Dip Feelings: Stories to Help Children Understand
This book walks children through the many instances in which they would be feeling two emotions at the same time, in settings such as school, with siblings and at home.
How Full Is Your Bucket
This book follows Felix throughout his day as the water in his bucket increases and decreases with the emotions of the day.
Ready Set Relax
Introduces research-based relaxation and self-regulation tools for children.
Today I Feel Silly: And Other Moods That Make My Day
This book follows a school-age girl as she tells of all the feelings she is having and why.
Unstoppable Me! 10 Ways to Soar Through Life
This book teaches 10 life lessons through short rhyming explanations that grab children’s attention. Themes such as persistence, having choices, creating peace and being healthy are explored. It includes examples and illustrations of how children may apply the lesson to their everyday life.
When You Are Brave
This book talks about what it means to be brave and have courage in the face of uncertainty.
Every child’s journey with a rare or chronic condition is unique, and no single book will fit every family or moment. We encourage caregivers to explore these resources at their own pace and choose the stories that feel right for their child today.
You are not alone—and neither is your child. We hope these books offer comfort, spark meaningful conversations, and remind families that strength, courage, and joy can exist alongside medical challenges.
Questions? We are here to help! Contact our free Help & Resource Center.