​​Epidermolysis Bullosa (EB) is a rare genetic condition where the skin is as fragile as butterfly wings. For those of us living with it, even minor friction—like wearing shoes, ski boots, or brushing against snow—can cause blisters, wounds, and extreme pain.

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I was born with EB. Doctors said I wouldn’t live six months. But through ski boots, snow burns, blisters, injuries, and constant pain—I chose motion. I chose mountains.

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Why EB Needs Attention

•  Invisible suffering: Most people don’t see the pain—just the scars.

•  Childhood impact: Kids with EB often can’t play, run, or fall without danger.

•  No cure yet: Treatment means bandaging wounds, managing pain, and avoiding friction.

• Variants matter: There are different severities—some more life-threatening than mine. But all of us live with daily struggles.

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 What the Butterfly Represents

• Fragility of skin

• Resilience of spirit

• Transformation through adversity

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 Why I Ski for EB

I ski with butterfly wings on my back to show that fragility isn’t weakness. It’s strength that rises anyway. I want to inspire kids with EB to chase big dreams—and show others that we’re more than our diagnosis.

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 Join the Movement

You can support EB awareness by:

• Sharing this page

• Wearing the butterfly symbol of rare strength 

• Supporting EB research foundations 

• Telling kids they’re strong, not broken

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Every run, every jump, every scar—that’s rare strength.

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