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Photographer's Words Go Viral After Woman with Rare Skin Disease Has Engagement Shoot with Fiancé

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We all have ideals that we hold to, whether or not we know it. Most of us, from a young age, have had an idea of what a perfect wedding looks like, thanks to Disney and other formative influences.

The bride? Dazzlingly beautiful with a pure-white dress. The groom? Handsome and dashing in his suit, tux, or regalia (a girl can dream, right?). The ceremony is perfection, and the rest of their life is so breezy that it can be summed up in three words: Happily ever after.

But life often challenges those picture-perfect fantasies because they’re unrealistic. We’re all flawed, all messy and imperfect, and what we can envision is rarely the way life ends up working out.

Edmilson Alcântara and his soon-to-be-wife, Karine de Souza, know this better than most.

Alcântara and de Souza are from Ceará, Brazil. They’re a lot like any young couple, and have plenty of photos documenting their outings that clearly display their affection for one another.

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But what makes them unique is that de Souza has xeroderma pigmentosum. Her skin is mottled and looks painful, and her face has been affected, leaving her to cover her nose and parts of her mouth with bandages — ostensibly to protect them and so that people can’t see what the disease has taken from her.

Xeroderma pigmentosum is rare. It’s a genetic disease that makes its victims incredibly sensitive to UV rays, so something as simple as going outside while the sun is shining is damaging for the young woman.

People with this condition are 10,000 times more likely to develop skin cancer, according to the National Organization for Rare Disorders. There is no cure, only methods of managing the disease.

Daniel Panisson, a photographer, captured the love between the two of them in a series of photos that are simultaneously heartwarming and heartbreaking. Some of the photos have even been labelled as “graphic,” which really makes you wonder how the brave young woman deals with the reactions she gets on a daily basis.

No doubt Alcântara’s love and support have made a huge difference in her life. Just in his short time working with them, Panisson was deeply impressed by their attitudes and their love, and couldn’t help but post the album and his takeaway on Facebook.

“And I can say, having portrayed your love brought me peace and much inspiration for soul,” a translation of his post reads. “The acceptance, the protection and all the affection involved between you, made me see that love is not lost.”

“Karine’s acceptance made me see how we are useless in complaining, when we have too much.”

Just ask one thing, thank yourself everyday for being who you are. Stop complaining about being who you are. Embrace life, and accept.”

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“Thank you for teaching me so much. You guys are amazing. You are the hope that is lacking in so many people.”

Thanks for the strong hug, and for the wonderful day we lived together. I carry your smile with me forever. ❤️”

People who have never met and will never meet this amazing couple have been strengthened by their story. Both de Souza and Alcântara are strong in their own right, and their love for each other will no doubt keep them strong.

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Amanda holds an MA in Rhetoric and TESOL from Cal Poly Pomona. After teaching composition and logic for several years, she's strayed into writing full-time and especially enjoys animal-related topics.
As of January 2019, Amanda has written over 1,000 stories for The Western Journal but doesn't really know how. Graduating from California State Polytechnic University with a MA in Rhetoric/Composition and TESOL, she wrote her thesis about metacognitive development and the skill transfer between reading and writing in freshman students.
She has a slew of interests that keep her busy, including trying out new recipes, enjoying nature, discussing ridiculous topics, reading, drawing, people watching, developing curriculum, and writing bios. Sometimes she has red hair, sometimes she has brown hair, sometimes she's had teal hair.
With a book on productive communication strategies in the works, Amanda is also writing and illustrating some children's books with her husband, Edward.
Location
Austin, Texas
Languages Spoken
English und ein bißchen Deutsch
Topics of Expertise
Faith, Animals, Cooking




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