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.
If you spot a purple butterfly sticker near a newborn, it is important to understand its meaning
When Millie Smith and Lewis Cann found out they were expecting a baby, they were overjoyed. As there was a history of twins in Millie’s family, she had a strong feeling that she was going to give birth to two little ones, and her instincts were right. The ultrasound confirmed that she was indeed expecting twins, but the doctors told them that one of the babies had a very small chance of survival.
ragically, one of their daughters was born at 30 weeks with anencephaly, a serious condition that affects the development of the brain and spinal cord. They learned that their precious baby had only moments or hours to live.
Knowing this, Millie and Lewis wanted to give her a name before they said goodbye. They chose the name Skye. Millie explained: “We felt she needed a name before she arrived. Knowing she wouldn’t be with us for long, I wanted her to have a name in those fleeting moments”.
The name “Skye” symbolized a connection to a place they could always remember when they looked up to the sky. “We held Skye close as she died. It was the most heartbreaking moment of our lives, but I’m proud that she fought to spend that time with us.” Skye only lived for three hours, a brief time filled with love while her parents cherished her beauty and presence.
After her death, Millie and Lewis were supported by a “bereavement midwife” and given access to a “Daisy Room”, a special room where parents could spend time with their baby before and after death. However, after Skye was gone, her memory seemed to fade; no one spoke of her, leaving Millie feeling like her daughter had never existed, which made her angry.
“Most of the nurses knew what had happened, but as the weeks went by, people stopped mentioning Skye. Other families around me had no idea about our loss”, Millie recalls.
While her other daughter, Callie, was still in the NICU, another mother who knew nothing about Millie’s situation remarked how lucky she was not to have twins. “None of the other parents knew about Skye, and that innocent comment almost broke me. I left the room in tears but didn’t have the heart to explain”, Millie said. “A simple sticker could have prevented this.”
This experience inspired Millie to design a sticker for incubators to mark the loss of one or more babies in a multiple birth. She chose butterflies to symbolise the ‘flown away’ babies and used the colour purple, which is suitable for any gender.
From this idea grew the Skye High Foundation, which promotes the Purple Butterflies initiative and helps raise awareness in hospitals around the world. The foundation also offers a range of purple butterfly merchandise.
“Although I can’t prevent these situations from occurring, I believe the more support we can provide through initiatives like the stickers, the better it will be for others who suffer this loss. It’s an incredibly tough journey”, said Millie. Today, her surviving daughter Callie is seven years old.
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