Book Nook - I Am Rare

Debut author Melissa White Boyer utilized her lived experiences to create her enlightening picture book "I Am Rare" (August 4, 2026, Yuni Press). After her son was diagnosed with a rare genetic condition known as Wiedemann-Steiner Syndrome, Melissa was inspired to create a teaching tool that would help explain genetic differences to children. Her lyrical picture book doesn't focus on a singular diagnosis, instead it uses inclusive language that helps children better understand both themselves and others. 

“I Am Rare” is a lyrical picture book told in the voice of a boy with an ultra-rare genetic condition. As he explores what makes him unique, he discovers that rare doesn’t mean wrong — it just means few — and that even superheroes draw their powers from what makes them different. A heartfelt story about identity, belonging, and the light within us all.

I had a chance to interview the author to learn more.

Why is it important for children with rare diseases to see themselves reflected in children's books?

• Children gain their confidence and self-esteem through the books they read. Seeing a character they identify with in the pages they read gives them a sense of belonging in a world they are learning to navigate. When that character is portrayed positively, it further reinforces a positive sense of self. This also normalizes differences among all humans, increasing the likelihood of neutral interactions in real life. 
• In Children’s literature, there are so few books that portray a child with a disability, let alone a child with a rare disorder. I believe a common misconception is that rare diseases are uncommon. Despite the phrasing, rare diseases may be individually rare, but collectively many. Over 300 million people worldwide have a rare disorder, 80% of which are genetic in nature, and most begin in childhood. For children, that’s about one in every neighborhood or classroom. 

What are some things that families can encourage their kids to do to help support friends and classmates who may be struggling with a lesser-known medical condition?

• Even small differences can feel isolating from peers in childhood. That isolation is especially amplified when some of those differences make even ordinary things more difficult. What may seem like a big difference to one child is likely another child’s norm, so don’t shy away from asking questions about what might be obvious anyway. It’s okay to be curious. Ask questions about how someone else might experience their life. A deeper understanding of another human’s experience builds empathy, which only deepens the opportunity for connection. 
• One thing that is not unique to a child with a lesser-known medical condition is their desire to belong. Making a child feel included—not out of pity, but out of a genuine desire to connect with that human—is more powerful than you could ever imagine. One good day can turn into a good week, a good year, which could change the trajectory of a child’s life, socially and emotionally. Invite them to play at recess and include them in a conversation. If you want to make a real difference, invite them to a birthday party or include them in the picture. It is in those moments and at those milestones that we, as parents, hold our breath, hoping that someone’s child or parent might remember that our children have feelings, too. 

How can books help teach other kids what it's like to live with a rare disease?

• Books can teach people, through stories, what it's like to experience life differently. Some books may shape understanding of a particular rare disease, either individually or collectively, while others may highlight the similarities in our shared human experience, despite our differences. Some books may focus on the physical or cognitive aspect of a disease, while others may emphasize the emotional aspect of living with a rare disease. Different books serve different purposes, but all are written with the intent to entertain or teach, helping others grow in their understanding and empathy. Different tones, characters, lessons, and even story lines all speak to each child differently. You never know which will resonate, so the more stories written about life with a rare disease, the more opportunities there are for those differences to become understood and for those living with rare diseases to feel seen.