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Karine de Souza, a 34-year-old woman from Brazil, lives with a rare condition called Xeroderma Pigmentosum (XP).

This genetic disorder makes her skin extremely sensitive to UV light—even short sun exposure could be deadly.

According to the Daily Mail, she’s already had to undergo an astonishing 219 surgeries just to manage her condition and reduce cancer risks.

Karine de Souza has a rare skin condition causing heightened UV sensitivity. Credit: kah05oficial / Instagram

Karine has had parts of her nose and lower lip surgically removed. She’s blind in one eye and fighting to save vision in the other.

To stay safe, she applies SPF 100 sunscreen every two hours and avoids sunlight as much as possible.

Still, despite all the health challenges, Karine never gave up on one of her biggest dreams—becoming a mother.

In January 2023, she and her husband Edmilson welcomed their baby girl, Zaya. Her arrival was more than a personal triumph—it was proof that Karine’s determination could silence the people who said she shouldn’t be a parent.

Right before she found out she was expecting, doctors discovered two cancerous growths in her lungs. Surgery was planned. But then painful lesions appeared on her back, causing a delay in the operation. That unexpected delay, Karine says, saved her unborn baby’s life.

“At this point, I didn’t know I was pregnant, though I actually was pregnant.” she recalled. “Today, I am so thankful for God; if it weren’t for the back lesions appearing, I would have undergone surgery and lost my child.”

 

 

Even with her condition, the pregnancy went smoothly, and Zaya was born healthy. Later, doctors reassured her that the odds of passing on XP were less than one percent.

“It does not affect her in any physical way. She is not affected by me being her mother, as I always do my best in everything I do.” she said. “The only possibility of my child having the same condition as me is if my husband has the same condition as me or if he was related to me.”

Beyond her medical journey, Karine also faces a constant stream of online negativity. Many strangers have lashed out at her online, calling her “irresponsible” simply because she chose to have a child.

“I don’t think it was irresponsible of me to have children. Having children and building a family was a dream that we had.” she said. “I believe every dream is valid despite the difficulties and struggles or situation you find yourself in.”

“People say that children will be scared of me and be afraid because of my condition and my face and so many other aspects.” she added. “The negative things people tend to say are ‘how irresponsible,’ that I wasn’t meant to have any children, that my child will be scared of her mother, and that I wasn’t meant to exist in this world.”

Karine doesn’t let the hate get to her anymore. Her strategy? Tune it out. “Nowadays I just brush it off, I’ve realized the issue isn’t with me but other people’s problems. The judgment is a reflection on themselves, not me.”

 

 

Her husband, who was understandably nervous about Zaya’s health at the beginning, now embraces fatherhood with joy. “When you know you’re about to be a father, you tend to worry about the smallest chances. Now, I worry about less serious things, like how to hold her.” he said.

“I do what I can for prevention. I feel so lucky that Zaya has a mother like Karine. Zaya is lucky to have a mother who is determined, strong, and a fighter like Karine.” he added.

The couple originally met online back in 2017. From the start, their relationship drew attention because of Karine’s appearance. But she’s built a strong following of people who admire her honesty, resilience, and confidence.

“I have a lot of people that follow me on social media. I’ve had a lot of encouraging messages with people saying I’m an inspiration,” she shared. “I feel like the happiest woman in the world to be Zaya’s mother.”

“Everyone has the right to fulfil their dreams, be happy and build something.” she continued. “This was something that I so yearned, wanted, and dreamt of regardless of the circumstances…You can’t let adversity get the better of you; you do have to try.”

And if she could leave people with one final message, it would be this: “Be happy, smile, because life happens only once.”

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