Off The Record
A Baby Girl Who ‘Never Stops Smiling’ Is Living With A Rare Skin Condition That Makes Her Skin Crack
Jennie Wilklow claimed that everything went “seemingly perfect” during the September 2017 C-section delivery of her daughter Anna. But in a second, everything shifted.
The 16-month-old is said to have been born with a disease that caused her skin to split open shortly 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.
According to the National Organization for Rare Disorders (NORD), the medical community quickly determined that Anna suffered from Harlequin ichthyosis, a rare skin ailment characterized by the presence of thick scales of skin on newborns. About one in every 500,000 people has it.
Wilklow wrote to INSIDER that a diagnosis was made an hour after Anna was born and that she spent her first month of life in a hospital.
“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.”
According to the Genetic and Rare Disease Information Center (GARD), mutations in the ABCA12gene, which provides instructions for manufacturing a protein essential for proper skin cell growth, are the underlying cause of Harlequin ichthyosis.
Affected individuals receive two copies of the defective gene, one from each parent.
The infant’s skin is thick and scaled from birth. According to NORD, a baby may have trouble breathing and feeding due to the tightness of their skin, which can also cause their lips and eyelids to turn inside out from being pulled on.
Babies born with Harlequin ichthyosis are more likely to be premature and to experience health problems like infection, dehydration, and respiratory distress.
According to the NORD, the thick skin scales fall off over the first several weeks of life.
According to People’s report, in the past, kids born with this disease had a low chance of survival. According to the Foundation for Ichthyosis and Related Skin Types (FIRST), improved neonatal care has increased survivability, and “several” people with Harlequin ichthyosis are now living into their thirties. However, not all babies born with the disease make it.
The skin is red and can be coated in thin scales once the thick scales that were present at birth have fallen off.
Emollients, which help keep the skin moist and prevent cracks that can lead to infection, are recommended by the NORD for the treatment of these chronic problems.
According to People, Wilklow bathes Anna for two hours many times a day and applies Aquaphor, a healing ointment, to her skin every few hours to prevent her skin from splitting.
Because her body creates so much extra skin, Anna needs to eat roughly 2,100 calories every day, according to People’s story.
“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.”
According to People, a family friend started a GoFundMe to collect money for Anna’s medical needs after Wilklow quit her job to care for her. Over $10,000 has been contributed as of this writing.
Anna has won the hearts of tens of thousands of people online. The family keeps up an Instagram account (username: A Baby Girl Who ‘Never Stops Smiling’ Is Living With A Rare Skin Condition That Makes Her Skin Crack) with over 24,000 followers, and a Facebook page (named “Hope for Anna“) with 48,000 likes.
There are pictures and videos of Anna eating, playing, and smiling on every page. Other pictures show Anna’s skincare routine and the symptoms she experiences with her skin.
Wilklow told INSIDER that she created the “Hope for Anna” page while Anna was still in the NICU shortly after her delivery.
“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.”
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“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.”
Wilklow claims that more than $10,000 has been raised thanks to Anna’s internet presence, which will go toward studying ichthyosis.
“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.”
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