What does raising a child with a rare disease look like?

Everyone seems so very excited for spring. The birds are chirping, tree buds are sprouting, and the sun hangs hotter and higher in the sky for longer stretches each day.

Well, almost everyone. Right on cue, this is when Shadow Jumpers — as we lovingly call our people living with erythropoietic protoporphyria (EPP) — must make extra efforts to dodge the sun. The launch of spring has them bracing for the inevitable pain they’ll experience.

EPP is an ultrarare genetic disease that causes severe reactions to sunlight, specifically to visible light in the blue-violet spectrum. People with EPP can’t safely be in the sun without risking excruciating, burning pain deep under the skin. There’s no rash or blistering, so others often don’t believe how bad it is. But the pain is real — and so is the cost of exposure.

My son Brady has EPP. And for the past 16 years, we’ve built our lives around the sun — not basking in it, but dodging it.

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What do others see?

I recently read an article about parenting a child with a rare disease — how people watch, assume, and sometimes judge what they don’t understand. It made me wonder: What did raising a child with EPP look like on the outside?

It looked like bedtime didn’t exist. We were that family at the park after dark, riding bikes under street lamps, swimming at the pool when the lifeguards were packing up. Not because we were lax parents, but because it was the only time the sun wasn’t a threat.

It looked like layered clothing in sweltering heat. I can still see Brady completely covered — hands, neck, face, even feet — while other kids ran barefoot in bathing suits. We weren’t trying to be dramatic. We were trying to prevent a reaction to the sun that feels like a chemical burn.

It looked like weird parking lot behavior. We had a disability placard, and sometimes we’d pull into a spot, hop out, and sprint to a building. I’m sure people stared. But every extra step in the sun added to the pain Brady might face for hours or days to come.

It looked like saying no — a lot. Camps, field days, birthday parties, backyard barbecues — we had to decline so many invitations. I worried we seemed standoffish or overprotective. In reality, we were just navigating a world not built for our child.

It looked like being that parent at team meetings. We were the ones asking, “Can the game be later in the day? Is there shade? Which direction does the field face?” I’m sure we seemed pushy.

It looked like being unfriendly on college tours. While others clustered around the student ambassador, nodding politely and laughing at the jokes, we were off to the side, hovering at the tree line, silently planning our next move to avoid the sun.

And spring? Spring was the hardest. In late fall and winter, everyone kind of looks like Brady, wearing jackets, gloves, and layers. But when spring hits, the difference becomes glaring. As others bask in the warmth, he is once again forced back into the shadows.

But here’s what our life felt like: Creativity. Resilience. Adaptability. Fierce, unwavering love. It felt like building a beautiful life around limitation.

And somewhere along the way, you become a Shadow Jumper yourself.

Pause before making assumptions

Even though I don’t have EPP, I still find myself checking the sun’s angle, looking for shade, and timing my movements as I always have. Brady’s in college now, and I’m still jumping shadows. Old habits formed from love don’t fade so easily.

Now, it’s not just about Brady for me. It’s about all the people out there — kids, teens, adults — who are wincing as they think of spring. They’re putting on their shadow-jumping armor while watching others lean into the golden glow of the season.

So if you see someone running for cover, dressed in layers on a sunny day, or turning down an invite to “just hang outside,” pause before you assume. They might be a Shadow Jumper or have another great reason for their actions that hasn’t occurred to you. Being a rare disease parent has taught me to lead with compassion, ditch assumptions, and remember that what you see rarely tells the whole story.

It may not look picture-perfect, but shadow jumping taught us how to move with purpose, dodge with grace, and love with fire. Honestly? It’s kind of our superpower.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.