A Brazilian woman living with a rare and life-threatening skin condition is pushing back against harsh criticism after becoming a mother.

Karine de Souza, 34, has Xeroderma Pigmentosum (XP), an extremely rare genetic disorder that makes her skin dangerously sensitive to UV light. Just a few moments in the sun could lead to deadly skin cancer. She’s already undergone more than 200 surgeries, lost part of her nose and lip, is blind in one eye, and fights to save vision in the other. She applies SPF 100 sunscreen every two hours to protect herself.

Despite these challenges, Karine and her husband, Edmilson, welcomed a healthy baby girl named Zaya in January 2023. Their joy was met with online cruelty from strangers who called her “irresponsible” for having a child.

What many didn’t know was that Karine was battling cancer during her pregnancy. Two tumors were found in her lungs just before she learned she was expecting. Surgery was scheduled, but when painful skin lesions appeared on her back, the operation was delayed — a twist of fate she now believes saved her baby’s life.

“At that point, I didn’t know I was pregnant,” Karine said. “Now, I thank God. If it weren’t for the delay, I would’ve had the surgery and lost my child.”

Thankfully, her pregnancy went smoothly. Doctors later confirmed the risk of her baby inheriting XP was less than 1%.

“She’s completely healthy,” Karine shared. “She doesn’t have the condition, and I do everything in my power to care for her. People assumed my condition would affect her, but that’s simply not true.”

Still, Karine has faced an onslaught of online bullying — people calling her “selfish,” claiming her child would be “afraid” of her appearance.

“I don’t think I was irresponsible at all,” she said. “Building a family was always our dream. Every dream is valid, no matter your situation.”

She’s learned to tune out the negativity. “People’s judgment says more about them than me,” she said. “Their problem is not mine.”

Her husband, now embracing fatherhood, says he couldn’t be more proud. “When I first learned I’d be a dad, I worried about everything,” he said. “Now, it’s about the small stuff — like how to hold her properly. Zaya is lucky to have a mom like Karine. She’s strong, determined, and incredible.”

Karine and Edmilson met online in 2017. Their relationship, and Karine’s condition, drew plenty of attention — but she also found support. Her social media is full of people inspired by her courage and resilience.

“I feel like the happiest woman in the world being Zaya’s mom,” Karine said. “Everyone deserves the chance to follow their dreams. Don’t let adversity win. Be happy, smile — life only happens once.”