When Jennie Wilklow welcomed her daughter Anna via C-section in September 2017, everything initially seemed perfect. But within moments of birth, their world changed dramatically.
“As soon as her skin touched the air, it began to harden and split, leaving open wounds all over her body,” Jennie recalled in an interview with People. “For months her skin had been building up in the womb, but once she was born, it became dry and hard, almost like armor.”
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Doctors quickly diagnosed Anna with Harlequin ichthyosis, a rare genetic skin disorder that affects roughly one in 500,000 people, according to the National Organization for Rare Disorders (NORD). The condition, caused by mutations in the ABCA12 gene, prevents skin cells from forming normally. Babies born with it develop thick, plate-like scales that crack and peel shortly after birth.
In the past, newborns with Harlequin ichthyosis often had little chance of survival. But with advances in neonatal care, more children with the disorder are living well into adulthood—some even into their thirties, as reported by the Foundation for Ichthyosis and Related Skin Types (FIRST).
Anna spent her first month in the hospital, and her care since then has required extraordinary effort. Jennie bathes her daughter for up to two hours several times a day and applies healing ointments like Aquaphor every few hours to keep her skin from splitting. Because her body works overtime to regenerate skin, Anna consumes about 2,100 calories daily—far more than most children her age.
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Despite the challenges, Anna radiates joy. “She is so happy all the time and just never stops smiling,” Jennie told INSIDER.
Sharing Anna’s Journey
To raise awareness about ichthyosis and document Anna’s journey, Jennie created the Hope for Anna Facebook page and an Instagram account. What began as a way to update family and friends has since grown into a community of support and inspiration. Today, Anna has more than 48,000 followers on Facebook and 24,000 on Instagram, where people are drawn to her infectious smile and uplifting spirit.
Her pages feature everyday moments—Anna eating, playing, and laughing—as well as glimpses into the rigorous skincare routines necessary to manage her condition.
“I never expected things to blow up like this,” Jennie admitted. “But ichthyosis needs the attention. It’s not widely known and therefore lacks funding and research.”
So far, the family has raised over $10,000 to help fund studies on the condition.
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A Message of Strength
While Anna’s medical needs are constant, Jennie emphasizes that her daughter’s story isn’t just about hardship—it’s about resilience.
“I want others to see Anna and understand that life isn’t about the obstacles, but about the grace in which you overcome them,” she said.
Anna’s smile has already touched thousands of hearts across the world, proving that even in the face of rare and difficult challenges, joy can shine the brightest.
