Melissa White Boyer: I Am Rare (genetically rare conditions, SEL)
Hi Melissa! Welcome to A NOVEL MIND! What is your personal family story, and what led you to write this book?
My story starts years before a rare diagnosis. Life was filled with many unknowns, seemingly unrelated symptoms, doctors’ appointments, tears, fears, and more questions as we tried to understand what was happening to our little boy.
After five years of advocating, a genetic test was finally approved. Six months later, we received a diagnosis of Wiedemann-Steiner Syndrome, a condition whose genetic cause had only been discovered two years prior to his birth. The diagnosis we thought would bring answers only brought more questions. At the time, only a small number of cases had been documented, and so much was still unknown.
We spent the next year, through COVID, grasping the magnitude of our life ahead and figuring out how to best move forward. Every new specialist added to our growing list of medical issues to manage. Initially, my instinct was to race toward a cure. Tunnel vision, head down... here we go.
Eventually, we stepped back and recognized that our son was still a little boy with feelings. He was just a little boy. Racing toward a cure couldn’t come without considering his emotional well-being. How he felt about himself would be largely shaped by how we spoke about him and how we internalized his condition.
That realization created a paradigm shift that changed every decision from then on. I chose to believe that life happened for us and not to us, because our perfect son was meant to be who he is, despite his medical complexities. He was, and still is, more than his diagnosis.
I knew he would one day ask me why he was different. I knew my answer would define the story he would tell himself about his own self-worth.
During my own journey of growth and acceptance, I found the poem “Welcome to Holland,” and it deeply resonated with me. It gave me words I could connect to and helped me feel seen through this experience.
I started wondering what words could make Parker feel something similar. What metaphor would bring him solace, or even a better understanding of himself? How would he explain his differences to his peers one day? Would he find the words, or would that moment crush him?
That’s when I Am Rare was born.
At first, it was simply a collection of words living in the Notes app on my phone. I would come back to them in the silence of the night, slowly shaping them into the words I hoped to share when that question eventually arrived. Soon, the intention shifted from words for just my son to words for his peers, too. Eventually, I Am Rare became my version of “Welcome to Holland” for children and families, something accessible that could help begin conversations about identity and belonging.
My hope is that I Am Rare gives children a way to understand and take pride in their own unique blueprint while giving the people around them a way to better understand it, too.
How could parents and educators use this book, and what kinds of discussions do you hope it will facilitate?
My hope is that parents and educators will use this book as a learning tool to teach children about their uniqueness from a biological perspective, while also opening conversations about the emotions and questions we ask ourselves about how we fit into the world, just as we are.
I believe this book gives children a chance to see themselves in a story and ponder deeper questions about identity and belonging, fostering connection and empathy.
The glossary and discussion questions at the end of the book are there intentionally. They give parents and educators a starting point for dialogue that brings together science and social-emotional learning. Children can learn what genes are and why they make each of us unique while also exploring bigger questions about what makes us different, what makes us belong, and how we respond when someone else’s differences are unfamiliar to us.
What do you think about the state of disability representation in books and media these days?
There is still a significant disparity between the number of children living with disabilities and the representation seen in books and media. That disparity can feel even greater for children living with rare conditions. Although individual rare diseases affect relatively small populations, collectively they affect hundreds of millions of people worldwide, many of them children. Yet the representation children encounter does not seem to reflect that reality.
I think we sometimes talk about representation in terms of whether someone is tangibly represented at all. But representation should also mean that our portrayals reflect that reality.
Disability encompasses an enormous range of diagnoses, abilities, challenges, and differences, many of which are not immediately visible. If the books and media children encounter only show a narrow version of that reality, then we are giving them an inaccurate depiction of what disability actually looks like.
Accurate representation also means allowing for emotional complexity. A child can struggle academically and have incredibly high emotional intelligence. Victories can come alongside very real emotional losses. A child can need significant support and still have tremendous strengths. All of these things can be true at the same time.
That is something I wanted to explore in I Am Rare. The character can wonder how he will fit into the world while also discovering pride in who he is. These ideas can coexist. One feeling doesn’t diminish the other.
We don’t need to sugarcoat difficult emotions in order to positively portray disability. Allowing a character to move through those emotions and reframe them into something affirming can show a child that it is okay to have hard feelings and still love who they are. It can also show them that difficult feelings don’t have to be permanent. We can acknowledge them, talk about them, and find ways to move through them.
If we never address hard emotions, we may unintentionally send the message that those feelings aren’t safe to share. Stories can give children a productive way to process what they are feeling and create opportunities for conversations that might otherwise be difficult to begin.
Difficult emotions aren’t unique to children with disabilities. Children with and without disabilities experience fear, uncertainty, loneliness, pride, frustration, joy, and the desire to belong. When stories allow children to recognize that emotional common ground, perhaps that shift in perspective can build just a little more empathy for one another.
This matters because children are still developing their understanding of themselves and the people around them. Their exposure to stories and media becomes part of the framework they use to navigate the real world. It can influence what feels familiar, how they perceive differences, how they interpret another child’s behavior, and ultimately how they interact with one another.
Unless we choose to represent the full range of disability more accurately, children may be left with an outdated model to look toward as they form their perceptions, feelings, and behaviors toward others. Childhood offers a crucial window to help children build confidence in themselves and empathy for others. We don’t want to miss that window.
Accurate representation isn’t an afterthought we should consider as we produce content. It is our social responsibility.
Why are stories such an effective way to reach kids and expand their empathy and knowledge of the world?
Children don’t like being lectured. They enjoy learning, but they also very much like coming to their own conclusions. When they come to their own conclusions, they buy into the lessons learned more than if we just told them the answer or how to think.
Wouldn’t it be so nice if all the good advice just sank in immediately? Unfortunately, teaching lessons takes time and patience. Often it takes a different voice, a different tone, or maybe just the right character to resonate with a particular child. Everyone has their favorite flavor. Someone’s unique, authentic voice is meant to reach the right reader at the right time.
When a child becomes invested in a character, they aren’t simply being handed a lesson. They are experiencing something alongside someone else. They can wonder what they would do, recognize a feeling they have experienced themselves, or become curious about an experience completely different from their own.
That is precisely why good stories and movies are so effective. Through storytelling, we let a child step into another character’s shoes. Ideally, we do more than teach a lesson through a story. We evoke a feeling that stays with them long after the words fade.
That is what I hope happens with I Am Rare. I don’t want a child to close the book simply knowing more about genes. I hope they walk away with a stronger sense of identity, pride in themselves, and acceptance of others. Beyond the story, I hope families and children are left with questions to reflect on and conversations that continue. I hope it evokes emotion.
What is next for you, Melissa? Can you share about your nonprofit?
Three more manuscripts are already written, waiting for their destiny to unfold. I have enjoyed the process of writing and understanding the literary landscape, and I am excited to see what comes next. As long as I am able, I will continue to write, speak, advocate, and build with the intent to make a positive impact on the world.
I have been in awe of the reception and impact my debut book, I Am Rare, has had on families since its publication. Beyond the book itself, it has also helped connect more professionals and families to our nonprofit, Rare Genes Movement. Those connections allow us to help more families.
At Rare Genes Movement, we envision a world where children with rare diseases are given access to the same educational, therapeutic, and community resources, regardless of how established their condition may be. That vision guides our movement. We help families by providing educational and financial resources while bridging the gap from diagnosis to direction.
I Am Rare helps children through storytelling, while Rare Genes Movement helps families through resources and advocacy. Although they are separate endeavors, they both grew out of the same purpose: to help children and families belong.
Does you have a list of further resources for interested families and teachers?
Families, educators, and professionals can learn more about Rare Genes Movement at www.raregenesmovement.org.
You can find more information about I Am Rare, my writing, and my other work at www.melissawhiteboyer.com.
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