Woman with rare skin disease hits back at critics who called her 'irresponsible' for having baby

A woman with a rare skin disease has slammed those who called her "irresponsible" for having a baby.

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

Karine de Souza, a 34-year-old from Brazil, lives with Xeroderma Pigmentosum (XP), an extremely rare genetic condition that makes her skin hypersensitive to UV light.

A step into the sun could mean deadly melanoma, and she’s already endured a staggering 219 surgeries because of it, the Daily Mail reported.

Souza has had part of her nose and lower lip removed. She’s blind in one eye, fighting to save vision in the other, and lathers on SPF100 sunscreen every two hours just to reduce the risks.

In January 2023, Souza and her husband Edmilson welcomed their daughter, Zaya, beating the odds and silencing the critics who told her she never should’ve become a parent.

Just before she found out she was pregnant, doctors discovered two cancerous nodes growing on Souza's lungs. Surgery was the next step, until painful lesions on her back forced doctors to delay the operation. That delay, she says, saved her 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.”

Despite her condition, Souza's pregnancy was smooth, and her daughter was born healthy. Doctors later told her the chance of passing XP to her daughter was 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 shared. “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.”

Souza doesn't just deal with health concerns; she’s also had to weather an onslaught of online abuse. Strangers branded her “irresponsible” for having a baby and accused her of scaring her own child because of her appearance.

“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’s response to the critics is to ignore them: "Nowadays I just brush it off, I’ve realised the issue isn’t with me but other people’s problems. The judgment is a reflection on themselves, not me.”

Despite the anxiety about Zaya’s health early on, Souza's husband is now soaking up life as a new dad. “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 first connected online in 2017, and it wasn’t long before their relationship drew comments due to Souza's appearance. But Karine has a massive following of fans who see her for what she is.

“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 said. “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 one more piece of advice: “Be happy, smile, because life happens only once.”