Thanks to the rise of social media, we’re all bombarded with images of seemingly perfect-looking people; it seems as though the world has become even more shallow in how people are judged.
For those of us that don’t fit the stereotypical “perfect” mold, the world can seem very cruel, with complete strangers feeling it necessary to criticize someone based on their appearance on social media.
Karine de Souza knows this more than anyone. The Brazilian has spent her life covering her skin in SPF100 sunscreens – even when she’s inside her home – due to her rare skin condition.
The 33-year-old was diagnosed with Xeroderma Pigmentosum when she was three years old which means she is at high risk of skin cancer.
Her ”one-in-a-million” condition, which is incurable, means she is highly sensitive to UV rays as she lacks the ability to repair any damage the sun causes to her skin.
Just a few minutes in the sun can mean incredibly painful sunburn for her. Growing up, she was often isolated from the outside world because it was too dangerous for her to spend too much time outside her house.
“When I expose myself to the sun it doesn’t happen in the moment, I don’t feel anything. However, in the future, the lesions appear and need to be removed because of cancer,” she said.
Karine has had to endure 130 surgical procedures to remove lesions caused by the sun, including the removal of her lower lip and part of her nose.
Sadly, it is not only a physical battle she has to endure. Karine often gets stared at in the street and has been the victim of verbal abuse both within her community and online.
But despite her suffering, she remains upbeat and happy and has even found love.
She met her husband Edmilson through social media, who fell in love with her “story and her strength.” Edmilson has always stood by Karine’s side, and he knew he wanted to spend the rest of his life with her.
He also decided to embrace Karine’s three children from her previous relationship, which of course, meant a lot to Karine.
”He came and he showed me that I could live a true love story”, she says.
But after posting photos of them together online, Karine was once again exposed to a whole host of offensive comments.
”We have already read many offensive comments calling me a monster, deformed, a zombie,” Karine said.
Other comments suggested that their relationship wasn’t genuine and that Karine was a ”sugar mommy,” and that she must be very rich.
”Because of the fact he’s a young man and pretty, that caught people’s attention and they didn’t believe that he was with me because he really liked me,” Karine said.
A photographer who captured the couple after they got engaged posted a selection of the images online and wrote:
”In a world where appearance matters more than the feeling, they met not by chance, but by a gathering of souls, an encounter of acceptance and character and love emerged when their souls met and today you are the inspiration to so many people who do not believe in themselves, in life and especially in love.
“THANK YOU every day for being who you are. STOP complaining for being like you are. HUG LIFE, and accept yourself. Much gratitude for teaching me so much. You guys are AMAZING. You are the missing hope in so many people. Thank you for the big hug, and for the wonderful day we experienced together. I carry your smile with me forever.”
His heartfelt words and beautiful images he captured of Karine and Edmilson went viral, and thousands of people commented, congratulating the couple.
Karine wants others to realize the importance of being positive.
”Be happy, smile, because life happens only once,” she said.
In 2023, Karine and Edmílson welcomed a baby girl into the world, and they couldn’t be happier! Their daughter, Zaia, was long awaited – Karine and her husband had been trying for a baby since 2020.
Karine has been through so much but thanks to her positive attitude she has found the happiness she deserves.
Her story is inspirational so help us inspire others in similar situations by sharing this story with your friends and family.
A baby with a rare skin disorder is born after an urgent C-section by medical professionals.
Throughout the nine months of pregnancy, a mother’s heart is filled with anticipation, excitement, and a hint of doubt. When an expecting parent gives birth, they all want the child to be healthy and happy. Regretfully, our expectations are not always met by the way things work out.
Jennie Wilklow, of Highland, New York, was looking forward to meeting her daughter. Jennie and her spouse were overcome with happiness the moment they held their baby.
After multiple ultrasounds and check-ups with the physician, the results consistently showed a healthy baby.
This assurance put their minds at rest, and they had no idea that their darling Anna would be born with a disease that would permanently alter their lives.
At 34 weeks, Jennie had a C-section to deliver Anna. She peered into Anna’s eyes when the physicians placed the baby in her arms and felt an overwhelming sense of love.
Everything was going fine with their cute little one. However, Jennie couldn’t help but feel apprehensive about her husband when he came to visit her.
Jennie told Cafe Mom, “My husband’s silence scared me.” I pressed him for additional information as the doctor was leaving the room, and he just sat there looking shocked. With remorse, he added, “It’s bad.”
Upon meeting her gaze, her spouse said, “Jennie, she has the most beautiful soul.” Jennie did not know what such terms meant at the moment. Her mind was racing, but she had no idea what was wrong.
Anna suffered from an uncommon disease known as harlequin ichthyosis, which showed up as thick, severely fractured diamond-shaped plates. Jennie said to Cafe Mom shortly after giving birth, “Her delicate skin hardened as they desperately tried to help her.”
The dramatic splitting that followed the hardening left her slathered in open wounds throughout her body.”Anna prevailed despite the physicians’ concerns about her prognosis. She was quite beautiful,” Jennie proudly declared.
Unfortunately, there is no known cure for harlequin ichthyosis. The treatment involves regular showering and thorough skin moisturization, which takes consistent effort. I used to bathe her for hours every few hours, slathering her in Vaseline.
It might not seem like much, but it was one of the things I struggled with the most. I had visualized all the amazing clothes my child would have,” Jennie said.
She set up the “harlequin diva” Instagram page and started posting images of Anna there in an effort to raise awareness of this illness. Through her articles, she sheds light on the challenges faced by parents of children with harlequin ichthyosis on a daily basis.
“Anna won many people’s hearts and is the pinnacle of perfection in its purest form.” She has a natural capacity to carry out these mundane tasks. The world celebrates with us every time we achieve a new milestone, Jennie said to Cafe Mom.
She went on, “I now realize that my love for my daughter is the reason Anna was given to me.” Because we were destined to be together, we will work together to redefine what true beauty means to the world.
In addition to being beautiful in her own right, Anna is fortunate to have parents who will stop at nothing to ensure that she has a happy existence.
Let’s help spread the news about Anna’s story by inviting our friends and family to read this article on Facebook. Despite our differences, we can work together to raise awareness of and respect for the incredible beauty and power that each individual holds.
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