Karine de Souza, who was called “irresponsible” by critics because she decided to have a baby despite suffering from Xeroderma Pigmentosum (XP), is now undergoing life-saving treatment thanks to an outpouring of support online.
The 34-year-old mom from Brazil has spent most of her life shielding herself from the sun due to a rare genetic disorder that makes her essentially allergic to sunlight.
Despite an aggressive and fast-spreading cancer recently threatening half her face, the kindness of strangers on the internet has allowed Karine to start immunotherapy, an expensive treatment not covered by Brazil’s public healthcare system.
Karine’s story of survival moved the internet, but she was cruelly attacked by trolls for becoming a mom
Image credits: Truly
Karine’s medical journey first went viral years ago when she shared what it’s like to live with XP.
While many admired Karine’s resilience despite her condition, she also faced a lot of adversity from internet trolls.
Critics were particularly offended by Karine after she gave birth to her daughter Zaya in 2023.
Image credits: Truly
Commenters called her “irresponsible” for choosing to become a parent. Some even claimed her child would be “afraid” of her appearance.
“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 told Truly in an interview.
Image credits: kah05oficial
“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 added.
Despite the cruel comments from trolls, Karine remained steadfast, stating that having children and raising a family with her husband, Edmilson, has been a dream.
Image credits: kah05oficial
“I don’t think it was irresponsible of me to have children,” Karine said. “Having children and building a family was a dream that we had… I believe every dream is valid.”
Doctors have since confirmed that Zaya has less than a 1% chance of inheriting her mother’s condition.
Image credits: kah05oficial
“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,” Karine said.
XP is an incredibly rare and incurable disease that affects a very small number of people worldwide
Image credits: Voaa / karinecancer
The rare, incurable disease has been described as a “one-in-a-million” condition, and it requires Karine to wear head-to-toe protective gear and apply SPF100 sunscreen perennially, according to the Daily Mail.
To date, Karine has undergone 260 surgical procedures to remove tumors caused by the disease.
XP has already taken away a lot from Karine, such as part of her ear, nose, eyes, and mouth. One of her breasts has also been removed because of cancer.
Image credits: Truly
After years of surgeries, Karine is once again fighting for her life, this time against an aggressive and fast-spreading cancer threatening half her face.
With chemotherapy and radiotherapy ruled out, her only hope was immunotherapy.
Her husband, daughter, and hundreds of thousands of netizens are her biggest supporters
Image credits: Truly
Karine met her husband, Edmilson, online in 2017 after he read about her incurable condition.
Since then, the couple has faced surgeries, public judgment, and numerous health crises together.
Despite hateful comments labeling their relationship a “scam” or calling her a “monster” and “zombie,” Edmilson has never left her side.
“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,” Edmilson said.
Karine has accumulated a strong social media presence. Her personal Instagram page, which she uses to share her journey with XP, currently has over 527,000 followers.
Karine’s supporters had her back once more recently when a crowdfunding campaign hosted by VOAA ended up raising more than R$415,299 as of writing, close to its R$447,000 (US$81.1K) goal.
Image credits: Truly
With the funds, Karine was able to begin immunotherapy, which doctors say is her best chance for survival.
“Karine has already started her immunotherapy treatment. She has fought so hard and now has the chance to continue her fight for life,” fundraiser organizers at VOAA shared in a recent update.
Netizens sympathized with Karine, with many stating that she is doing well as a mother to Zaya
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