Acknowledging Children With Genetic Differences in Picture Books

I recently reached out to a mom in my town whose child has a rare genetic disorder. I hoped she would find comfort in knowing there was someone else in town who understood her journey, but I hadn’t received a message back. Months later, after I shared a story about my son online, I finally heard back, but not because of what I had written.

(Writing Around the Thing in Fiction.)

She told me about a school event her daughter had attended to watch her sibling. Her daughter, who uses a wheelchair, was understandably nervous about being there. A boy noticed her and asked her name. Not only did he ask her name, but he also encouraged the children around him to say hello and cheer her on. She said that her daughter’s face lit up like a Christmas tree.

Her mother later shared that what may have seemed like a small interaction became something much bigger for her daughter. It made her feel like she truly belonged. It changed the way she felt about going to school. It reminded her that there was room for her there, too.

At the time, her mother had no idea that the little boy who helped make her daughter feel like she belonged was also the child with a rare genetic disorder, the one whose mother had reached out months prior. She simply knew that another child had made her daughter feel accepted. When she connected the dots, she reached out to tell me about the impact of that interaction.

Maybe that one interaction changed more than just a single afternoon.

As an author, I couldn't help but think about how that interaction would have played out in a picture book. If someone else were writing the story, adding plot, adventure, and colorful illustrations, my son would have been the hero that day. Perhaps the unlikely one.

Children's books don't just reflect the world children live in. They help shape the world children create for one another.

Authors have an opportunity to fill a gap in children's literature. While many wonderful books have been written about specific genetic conditions, far fewer acknowledge genetic differences more broadly. Although individual genetic conditions may be rare, collectively they represent a much larger community than many people realize. By filling this gap, we have an opportunity to connect children and families whose experiences are often more alike than they are different.

How can we acknowledge children with genetic differences in picture books in an empowering way? Doing so respectfully requires nuance.

I believe the best way to celebrate children with genetic differences is by allowing them to become unlikely heroes, authentically representing them in ways that reflect the world they live in, and including them as their whole selves.

There is power in who we choose to make the hero. The hero doesn't just change how one child sees themselves. It changes how every child sees them. Children naturally connect with protagonists who remind them of themselves in some way. When those characters overcome obstacles, extend kindness, or lead the adventure, readers often find the courage to do the same. The more we show children with genetic differences as heroes, the more we dismantle old belief systems about what a hero looks like and how children perceive one another.

My son was the hero that day at school. His diagnosis wasn't the story. His kindness was.

Authentic representation recognizes that not all genetic differences are immediately apparent. Some children use wheelchairs, feeding tubes, hearing aids, or communication devices, and those forms of representation are incredibly important. But many children with genetic differences do not have obvious physical markers at all. Others may have short stature, subtle facial features, or developmental differences that are part of their diagnosis but not immediately apparent to someone unfamiliar with that condition.

Authenticity isn't measured by how obvious a diagnosis appears on the page. Sometimes the most accurate representation is allowing a child's genetic difference to exist naturally within the story, just as it does in everyday life.

Picture books have a unique opportunity to reflect that reality. By portraying children as they truly are, rather than relying only on the visual cues people often associate with disability or rare disease, writers and illustrators can help challenge misconceptions and broaden understanding. When children encounter characters with genetic differences, whether visually or through the story's context, those differences become more familiar. And when something becomes familiar, we no longer fear it.

Sometimes, the most meaningful thing we can do to acknowledge or celebrate children with genetic differences is to simply put them in the story. As the friend. As the sibling. As the classmate. Sometimes they’re the hero. Sometimes they’re part of a world they already live in, one that reminds them that they belong there, too. That's the fascinating, wonderful thing about stories. We may never witness the immediate ripple effect of our words, the feelings they create, the perspectives they shift, or the actions they inspire. But if even one child feels like they truly belong and that there is room for them in this world, then every intentional word was worth writing.

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