You can read more about her on her website.
Facebook: @melissawhiteboyer
What inspired you to write “I Am Rare”, and how did your experience as a parent shape the story?
The inspiration for I Am Rare came as I sought the words to help my own child understand his rare diagnosis. I wanted to give him words that he could hold on to; words that were simple enough for him to understand, but empowering in the metaphor of superheroes deriving their powers from their mutations also. I imagined him explaining this to his peers with pride in his differences rather than embarrassment. As I wrote this for him, I just knew there were so many other families also struggling to find the words to help their child understand their differences, regardless of their rare diagnosis. This is when I Am Rare was born.
Why was it important for the book not to focus on a single diagnosis?
The heart of I Am Rare is about understanding where genetic differences come from and discovering the light and power that come from truly accepting oneself. It also gives a superhero metaphor that children can hold onto with pride. The need and desire for a child to understand themself, to feel a sense of belonging, and to see themselves represented in the books they read are not unique to my son’s specific condition, but universal among the 150 million children affected by rare genetic conditions. This story is both educational and empowering, and it is needed in children’s literature for children, their families, peers, and educators.
How does the superhero metaphor help children understand difference and identity?
The superhero metaphor allows a child to understand that even superheroes derive their power from their mutations. When a superhero's difference gives them their power and is seen as a positive figure, a child can find their own strength in their differences, accepting themselves for exactly who they are and who they were always meant to be.
How can parents use this book to start meaningful conversations with their children?
Parents can use this story to ask their child about their feelings, differences, big and small, and to better explain where those differences come from. They can also utilize the questions and glossary at the back of the book to help promote conversation and better understanding. I have read this story to my own son many times and have watched him grow in both his understanding and acceptance over time as he continues to evolve.
In what ways can I Am Rare be used in classrooms, libraries, or therapy settings?
I Am Rare can help children understand the differences among those around them and where their own differences come from. Providing a metaphor, such as a superhero, as a tangible figure helps them view differences in a positive light. The story also holds space for children to reflect on their sense of belonging. The questions and glossary at the end of the book promote conversation and deepen understanding of genetics, differences, and identity. It also promotes awareness and kindness for those around us and an acceptance of ourselves.
How do you hope children feel after reading this book?
I hope children feel understood and experience a sense of acceptance and belonging, opening the door to pride.
Why is it important to talk about identity and difference at an early age?
Children begin developing self-esteem, confidence, and identity in early childhood, and books play a significant role in that process. Seeing themselves reflected in stories and portrayed with dignity reinforces a sense of belonging and acceptance. When they don’t, it can lead to feelings of isolation and diminished self-worth. By discussing identity and differences early, children learn to accept themselves and others for who they are, fostering kindness and inclusion in their communities.
How has your work with the Rare Genes Movement influenced the way you think about language, storytelling, and advocacy?
My work with Rare Genes Movement has deepened my understanding of the many families navigating different rare conditions, all living and breathing to simply give their children the best possible lives. It has reinforced how delicate the balance can be between advocating for a child’s medical needs and protecting their self-esteem, confidence, and sense of identity. I’ve experienced firsthand the power of storytelling, both by sharing my own story and by hearing the stories other families have shared with me. Sometimes, hearing a story that hits home can change the trajectory of someone’s day, or even their life. It has also taught me how important language is in finding the words to honestly acknowledge reality while still leaving room for hope, dignity, and possibility.
Instagram: @booksforwardpr
TikTok: @booksforwardpr
Facebook: @BooksForward)