Baby Anna, who is now 17 months old, was born on September 17, 2017, at Vassar Brothers Medical Centre in Poughkeepsie, New York. Little did her parents Jennie and James know it, but one of them was a carrier for a faulty gene which caused their baby to be born with harlequin ichthyosis; a condition which means that her skin is unable to retain any moisture.

The little girl was rushed to intensive care soon after her birth, and now she needs four hours’ worth of baths daily, as well as the regular application of lotion to help peel off her excess skin.

Commenting on her little girl's unusual condition in a recent interview, Jennie stated: "I heard the nurse say, ‘She’s beautiful,’ but then after that there was an uncomfortable silence and I suddenly became very worried. I took her in my arms and she was wrapped up in plastic.

"Her whole body had cuts all over it, caused by the extra layers of skin cracking. The poor thing looked so unwell and her eyes were swollen shut ... We weren’t able to touch her, as the risk from infection is very high with harlequin ichthyosis sufferers in the first few days of life, as bacteria can very easily get into the open cuts on the skin.

"We were told just to take it day by day, as the chance of death was very high ... It was all very confusing as no one knew what it was for a while. And I couldn’t understand how something had gone wrong, as throughout my pregnancy everything had gone so well and the ultrasound and stats – or oxygen saturation levels – were all perfect. Seeing her was mindblowing, as she didn’t even look like a baby."

She added: "It was amazing being able to take her home at last, after all that waiting wondering whether or not she would live ... In spite of everything she has been through, Anna is the happiest little baby and very rarely complains about the pain she must sometimes be in. It is a lot of work each day caring for her skin and there will be challenges ahead for us. But her joyful personality makes it all worth it."

Despite her condition, Jennie says that her little girl is happy, and has a playful and upbeat personality. Anna is growing normally, although she does have some mobility issues due to her to her taut skin, which can restrict her movement. Jennie just hopes that her daughter will be able to retain her sunny disposition into adulthood.

While most children have spent the summer running around outside under the sun, seven-year-old Adeline Tonhaeuser has been forced to stay hidden from its rays.

For her, sunlight isn’t just uncomfortable — it’s so dangerous it can result is severe pain for the child.

Adeline, from Hartford, Wisconsin, was born with a rare and severe form of porphyria, a condition that causes her skin to blister in minutes when exposed to UV light.

It’s a condition that has turned Adeline’s life upside down. Every day is a battle to stay safe from the sun. When she goes to school, she has to cover every inch of her skin from head to toe, even wearing sunscreen indoors just to be extra cautious. She must then spend recess inside.

“Adeline makes it well known to us that she hates the disease,” her mother, Megan Dunn, told Today. “She wants to be normal, and she wants to go outside and play like the other kids.”

Adeline’s journey with this condition began when she was just a baby. At 18 months old, she was diagnosed with congenital erythropoietic porphyria, a type of the disorder so rare that there are only about 200 confirmed cases worldwide, according to the National Organization for Rare Disorders. 

The genetic disorder was inherited due to a gene variant carried by both her parents - however, neither her mom nor dad have the disease.

Her symptoms were alarming from the start — her urine turned red, she lost her toenails, and her skin began breaking out in painful blisters.

For Adeline’s parents, the diagnosis was devastating. “It was a complete gut punch. We were just a mess emotionally,” her father, Kurt Tonhaeuser, shared. But instead of letting the diagnosis take over their lives, they sprang into action, turning their home into a sun-safe haven and working with Adeline’s school to make sure she could still attend classes without risking UV exposure.

Despite all the precautions, Adeline’s life is far from easy. Even just a few minutes outside without full protection can cause a severe reaction. Last summer, she experienced a major blister breakout — likely from sneaking out to play with her siblings. It was a painful lesson, but it made her more aware of the risks she faces.

“As far as playing during the day, no. We just don’t let her outside. it’s just too risky. It gets more difficult as she gets older because naturally, she sees her siblings outside and she wants to be out there,” her father said, before adding that he then becomes concerned about the impact the isolation is having on his daughter.

Adeline’s condition doesn’t just affect her skin. Twice a year, she undergoes blood tests to monitor her health, particularly her liver and iron levels, which can be impacted by the disease. There’s also the possibility that she may need a bone marrow transplant in the future. For now, though, her parents are doing everything they can to keep her safe.

“As long as Adeline stays covered and has zero exposure to any UV or outside light, then she will not have any reactions,” her mom explained. But as she gets older, it’s becoming more difficult to keep her inside. “Naturally, she sees her siblings outside and she wants to be out there.”

Fortunately, her parents are always looking out for new ways that allow Adeline to be a normal kid - such as taking her to a Sun Escape camp at Victory Junction in North Carolina back in May.

Despite the challenges, Adeline’s parents are incredibly proud of how their daughter is handling it all. “I think she’s rocking it,” Dunn said. “We just have to continue to build her up. She’s very confident, and I want her to stay that way.”

In a blog post on the Porphorya Foundation website, the parents revealed that Adeline must also avoid “artificial light” as well as the sun, “unless there is a cure for CEP”. 

“We just wanted this to be a bad dream,” they added. “We now must do whatever it takes to protect Adeline.”

While Adeline may never have the freedom to run around in the sun like other kids, her resilience and strength are undeniable. And with the support of her family, she’s determined to live her best life — even if it has to be in the shade.

Featured image credit: SEAN GLADWELL / Getty

Eczema is one of the most common skin conditions in the world, estimated to affect anywhere between 10 per cent to 20 per cent of children, and between one and three per cent of the planet's adult population. That's a lot of people, and for many, the flaky skin and red, itchy scabs are only a minor irritation. But for charity worker Harriet Hammond, her eczema has made her life almost unbearable, and now her skin is so sore and dry that she is unable to be intimate with her partner, Tom Barratt.

Harriet had been plagued by painful eczema since her childhood, and over the years had been prescribed various steroidal creams by doctors to help soothe her symptoms. However, as she entered adolescence, she gradually built up a tolerance to steroids, and when she decided to go cold turkey, she was met with a number of unpleasant withdrawal side effects, which included livid rashes and painful, oozing blisters.

Without the steroid creams, Harriet's flesh had become so covered in rashes and oozing blisters that she was forced to sign off work and move back in with her retired parents. Unable to move far or wash properly, because of the excruciating pain her skin was in, she needed help to perform simple tasks like making herself a hot drink, and soon her bed was covered in shed scaly skin. Harriet's sleep cycle was also badly affected, and at one point she was only sleeping for three hours a night due to the pain she was in.

Commenting on her agonising skin condition in a recent interview, Harriet stated; "There were rashes all over my body and my face was red and incredibly swollen. I was signed off work by a doctor because my skin appeared to be literally falling off ... I couldn’t walk or move much at all without being in pain. I lost over two stone in weight, but I have no idea why as I was still eating, and lost a third of my hair as my dry and scabby scalp made it fall out."

She added: "I feel better now that I’m not housebound, but I’m still suffering. My work distracts me but, once I get home, the reality that it hasn’t gone away hits me again and I feel the urge to scratch or cry ...We can’t be intimate at all because it’s just too uncomfortable and painful to move that much and be so close to someone else’s skin.

"It’s been this way for a year - ever since I ditched steroids. We’re affectionate and he does a lot for me, like washing my hair and cooking for me because getting my hands wet makes them awfully itchy and preparing food can bring my skin out in more rashes."

"I don’t want him to become my carer, so I try to make my own dinners sometimes – which ends up being a celebration for the achievement. We hoped to move away last summer to Hertfordshire and get new jobs because we wanted to make a fresh start for ourselves, but my condition has put us on hold. I hope that with time I will improve, and eventually, we can live how we always dreamed."

Despite all this, Harriet is still confident that staying off the steroids will be better for her in the long run, and although she is still affected, she claims that her skin is beginning to improve gradually.

When people say that someone "isn't comfortable for in their own skin" it's usually just a turn of phrase. But for 20-year-old Vivienne Hew, she means it literally. That's because Vivienne has spent the last three years of her life fighting topical steroid withdrawal after she became addicted to the eczema-soothing creams that doctors prescribed her with.

As a result of this, Vivienne has been left bedridden and disfigured by out-of-control eczema, which has left her skin cracked, red, itchy and sore. The broken skin often oozes pus, and Vivienne states that the flares cause her so much pain that showering feels she's like pouring acid over herself.

Vivienne had been prescribed the creams since she was a baby, but the older the got the less effective they appeared to be. Irritated, Vivienne took to the net to learn more, where she stumbled across the International Topical Steroid Addiction Network (ITSAN). It was there that she learned she had developed topical steroid withdrawal (TSW), or red skin syndrome, which sees a person suffer agonising flare-ups when they try to wean themselves off of steroidal creams.

Commenting on her unfortunate situation, Vivienne stated: "I can’t work at the moment, and mainly stay [at] home. My mum has to help me do virtually everything. I experience really intense itching, almost like it’s coming from the bone. I put ice packs on it to soothe it, but nothing seems to help. Even showering is painful. The water feels like acid. The symptoms were way beyond eczema. My face would swell and burn, and the skin oozed and flaked. It got to the point where I shed so much, I had to hoover my bed and room every single day."

"I still get a lot of anxiety about it. I’m even scared to open the door to the postman. I rarely look people in the eye when I’m talking to them because I feel so self-conscious. I’ve never had anyone say anything nasty, but people do stare a lot when I go out. I wish I could tell them that this is something I can’t control. It’s comforting to get that support and speak to people who know how I feel. I want others to realise that topical steroids can do more harm than good before it’s too late, so they don’t have to go through what I am."

However, thing are beginning to look up for Vivienne, who is already showing some signs of improvement overall. Vivienne has been taking extremely delicate care of her body - bathing herself in sea salts, taking a number of supplements and by avoiding tight clothing made of synthetic materials. Vivienne has also decided to become a vegan and give up gluten, after becoming concerned that her diet was linked to her skin. Perhaps her skin will calm down again soon, perhaps not. Either way, we wish her the very best.

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

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.

But none of that stopped her from chasing her dream: motherhood.

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.”

Featured image credit: Tetra Images / Getty