Celebrating Emelia: Science for All

At the Center for Genome Engineering at the University of Minnesota, we believe in the power of science to transform lives—and in the power of every life to transform science. One of the most powerful examples of this belief is a bright, bold, and brilliant 11-year-old named Emelia.

Emelia is funny. She’s social. She loves dancing, riding roller coasters, and being around her friends. She also has a rare genetic mutation known as DDX3X, which is associated with non-speaking autism involving a disconnect between her brain and body. The condition is often described in medical literature as being linked to intellectual disabilities and developmental delays—but Emelia challenges that definition. None of this has stopped her from expressing who she is or dreaming about what she wants to become.

Thanks to the relentless advocacy of her parents and a supportive education team, Emelia has learned to communicate using a method called spelling—pointing to or typing letters one at a time to form words, thoughts, and ideas. And what Emelia has to say is nothing short of extraordinary. She has shared about her passion for science, and how her diagnosis has led her to take a deep interest in genetics. Her dream? To one day become a genetic researcher or clinician.

We were so inspired that we invited Emelia and her family to spend a day in the Moriarity/Webber lab at the Center for Genome Engineering. During her visit, she met scientists, explored interactive models, attended presentations, and toured the lab spaces where we study the very conditions that shape lives like hers. Her questions were thoughtful. Her insights were meaningful. And her presence was unforgettable.

During her visit, PhD research assistant Ella Eaton shared her work on developing a base editor therapy for a founder mutation of SCID-A, a rare immune disorder. While Emelia may have seemed quiet at first glance, she was deeply engaged in the discussion. She asked thoughtful clarifying questions—just like any aspiring young scientist would.

She wanted to know how the Cas9 enzyme finds the right spot in the genome, and quickly grasped how the 20-base sequence of the guide RNA leads the enzyme to its target. She also asked whether someone could have the SCID-A mutation without symptoms, prompting a conversation about recessive genetic conditions and how carrier status works. These are advanced concepts for anyone—let alone an 11-year-old—and yet, Emelia was right there with us, absorbing, questioning, learning.

Our conversation extended to the genetics of DDX3X and the observation that many autistic individuals experience chronic gastrointestinal issues. This led to a discussion on the brain-gut connection and the future of research into the gut microbiome and barrier function. Emelia may not yet have all the scientific vocabulary, but her questions are already aligned with some of the most pressing research themes of our time.

And of course—there was laughter, too. One of our favorite moments came when Emelia got to pipette for the first time. True to form, she used it to squirt us with water, giggling with delight. It was the perfect reminder that behind all her brilliance, Emelia is also just a kid who loves to have fun.

People like Emelia remind us of the incredible richness of human intelligence. While their ways of communicating may differ from the norm, that doesn’t diminish the depth of their thoughts or the brilliance of their minds. Emelia is a powerful example of how much potential lies beyond conventional expectations.

As a scientific community, we have a responsibility, and an opportunity, to do better. We must celebrate and nurture all forms of intelligence, creating inclusive spaces where neurodivergent voices are not only heard but truly valued and uplifted.

As Emelia herself typed:
“Sharing what I know is one of my biggest challenges. And I know a lot! Please don’t underestimate me.”

We hear you, Emelia. Loud and clear.
And we can’t wait to see the discoveries you’ll make.