A baby girl who ‘never stops smiling’ is living with a rare condition that makes her skin crack

Jennie Wilklow said things were “seemingly perfect” when her daughter Anna was born via C-section in September 2017. But everything changed in an instant. According to the people, the now 16-month-old was born with a condition that made her skin crack open just minutes after birth.

“Moments after her skin hit the air it began to harden and then split causing open wounds all over her body,” she told People. “For months her skin had been building up but now out of the womb it became dry and hard, like armor.”

“The doctors and nurses were visibly shaken, and my husband sat silently in the post-op room,” she added.

Anna was soon diagnosed with Harlequin ichthyosis, a rare skin condition in which infants are born covered in thick scales of skin, according to the National Organization for Rare Disorders (NORD). It affects approximately one in 500,000 individuals.

In an email to INSIDER, Wilklow said that Anna was diagnosed within an hour of her birth and spent the first month of her life being cared for in a medical center.

“My reaction was just complete shock because just a few minutes before I thought I was having a perfectly healthy baby girl,” she told INSIDER. “It’s the kind of moment that stays with you forever and reminds you every day just how precious life is.”

Harlequin ichthyosis is a genetic condition affecting the skin

Harlequin ichthyosis is caused by mutations ABCA12gene, which gives the body instructions on making a protein that’s critical for normal skin cell development, according to the Genetic and Rare Disease Information Center (GARD). People with the condition inherit one copy of the mutated gene from each parent.

Babies born with the condition are covered in thick skin scales. The skin’s tightness can pull on the eyes and mouth, making the lips and eyelids turn inside out, or pull across a baby’s chest and abdomen, causing breathing and eating difficulties, according to the NORD. Babies with Harlequin ichthyosis are typically born premature, too, and are also at higher risk for infection, dehydration, and other complications. The thick skin scales gradually shed over the first weeks after birth, the NORD adds.

In the past, babies with the condition often did not survive long after birth, People noted in its report. But, according to the Foundation for Ichthyosis and Related Skin Types (FIRST), improved neonatal care has increased survival, and “several” people with Harlequin ichthyosis are living in their teens and twenties. Still, some newborns with the condition don’t survive.

Once the thick skin scales present at birth have shed, the skin is red and can be covered in thin scales. Treatment for these ongoing symptoms involves the use of emollients, which help keep the skin moisturized, preventing cracks that may lead to infection, according to the NORD.

To keep her skin from cracking, Anna is covered in healing ointment and bathed multiple times a day

To keep Anna’s skin from cracking, Wilklow gives her two-hour baths multiple times a day and covers her in the healing ointment Aquaphor every few hours, People reported. Anna also receives occupational and physical therapy, and because her body produces so much extra skin, she needs to eat around 2,100 calories every day, People’s report added.

“I decided to stop work and stay home with her full time to give her everything she needs and I couldn’t be happier with my decision,” Wilklow told People. “She has a lot of challenges, but she never complains so neither do I.”

After Wilklow left her job to care for her daughter, a family friend set up a GoFundMe to raise money for Anna’s medical expenses, according to People. As of this writing, donors have contributed more than $10,000.

Thousands of people follow Anna’s story on social media

Anna has captured thousands of hearts on social media. The family maintains a Facebook page titled “Hope for Anna” with 48,000 likes, and an Instagram profile (username: @harlequindiva) with more than 24,0000 followers. Each page is populated with photos and videos of Anna playing, eating, and smiling. Other photos offer a glimpse into Anna’s daily care regimen and her skin symptoms.

Wilklow told INSIDER she started the “Hope for Anna” page when Anna was still in the neonatal intensive care unit, just after her birth.

“I started [it] mainly to update my incredible community and not to flood my personal page,” she told INSIDER. “It turned into much more than that when I shared a side by side video [showing Anna when] she was in the hospital and the other was a few months later. The hospital video went viral, but something about Anna’s soul has touched people from the very moment she opened her eyes.”

“I never expected things to blow up like this, but honestly, ichthyosis needs the attention,” Wilklow added. “[It’s] not widely known about and therefore lacks funding and research.”

So far, Anna’s online presence has also helped raise more than $10,000 for ichthyosis research, according to Wilklow.

“She is so happy all of the time and just never stops smiling,” Wilklow told INSIDER. “I want others to see Anna and understand that life isn’t about the obstacles but about the grace in which you overcome them.”