What Does a Miracle Look Like? The Story Behind My New Mural

When BioCryst asked me to create a mural for them, they gave me a prompt that really made me stop and think: "What would it look like if Netherton Syndrome (NS) was solved?"

As someone who lives with NS, this wasn't just another project. It was a chance to put my deepest hopes onto a canvas. But I’ll be honest—getting to the final image was a journey of its own.

The Beach vs. Reality

The first thing that came to my mind was the beach. For those of us with NS, the beach represents a kind of ultimate freedom—just being able to be in the sun, feeling comfortable in our skin, and not being stared at because of a visual difference. I thought about kids being able to hold hands or hug without feeling rejected or ashamed.

I even talked to other people with Nethertons, and without me saying a word, they said the exact same things: "Beach," "hugging," "holding hands."

So, I sketched a nice beach scene. But the more I looked at it, the more I realized I didn't feel connected to it at all. It was beautiful, but it wasn't my reality. It felt too distant.

Finding "Her"

I decided to draw what it actually feels like to have NS. I came up with an image of a girl walking in a dress with words falling off her, making a pile as she walked away from them.

When it came to the girl herself, she became a hybrid of how I see myself and how I want to see myself. For example, I’ve always wanted long, flowy hair, so I gave her that in the painting. But I decided to keep the rash on her legs (in the final painting). If she were "perfect," she wouldn't be me anymore. I didn't want her to feel detached from the truth of my life.

The Blooming Tree

To answer the question of what a "solved" future looks like, I thought about what a complete miracle that would be. Something that shouldn't be possible, but is.

That’s how I came up with the tree blooming in the middle of winter. Trees don’t bloom in thick snow—it’s a miracle. To me, that symbolized the hope of healing.

"I Like a Good Challenge"

When I showed the sketches to the team, they liked the beach, but Jon (the CEO) loved the girl walking. He told me, "I want you to combine them."

For a split second, I felt overwhelmed. How do you put a beach and a snowy winter in the same image? But then I told him, "I like a good challenge." On a walk later that day, it clicked: The girl is walking toward the tree (the miracle), and the future is waiting behind it in the distance.
It wasn't just an image anymore—it was a story.

The Unveiling

The day of the unveiling was emotional. Jon was retiring, and we both got to say a few words. I told the team at BioCryst that they would never know how much it means to us that they are working on something that has never been done before in human history.

When the curtain fell, there was nearly a full minute of silence. I wasn't sure what to think, but when I looked around, I saw so many tears. I don’t think I really realized until that moment that art could do that. It was wonderful to see how much they truly care.

Maybe, one day, this story won't just be on a canvas—it will be my story, too.