Note: we are republishing this story which originally made the news in January 2019.
A New York mother’s world changed the moment her daughter came into the world—and so did her life’s purpose.
Only moments after delivering her baby via C-section in September 2017, Jennie Wilklow realized something wasn’t right. Her newborn daughter, Anna, began developing thick, hardened skin that cracked open, leaving her tiny body covered in deep, painful fissures.
“Everything seemed fine at first,” Wilklow, 34, recalled. “But as soon as Anna’s skin was exposed to air, it hardened like armor and began splitting apart. There were open wounds everywhere.”
Doctors and nurses at the hospital were stunned. As Anna’s eyelids swelled shut and the circulation in her hands and feet was restricted, it became clear this was no ordinary delivery. Wilklow and her husband, sitting in a post-op room, were left speechless as medical staff rushed to understand what was happening.
Anna had been born with harlequin ichthyosis, a rare and severe genetic condition that causes a newborn’s skin to grow far too quickly, forming hard, plate-like scales. According to the First Skin Foundation, this disorder can lead to serious complications, including flipped eyelids and lips, breathing difficulties, and extreme vulnerability to infection.
In decades past, the diagnosis was often fatal within days. But thanks to advancements in neonatal care, many children with harlequin ichthyosis are now living longer, healthier lives—some into their 20s and beyond. Still, the condition remains life-threatening in severe cases.
Anna’s survival depends on around-the-clock care. Wilklow left her job to become her daughter’s full-time caregiver. She bathes Anna twice a day—each session lasting up to two hours—and applies Aquaphor ointment to keep her skin moisturized and infection-free. “It’s exhausting, but it’s worth every second,” Wilklow said. “She’s always smiling, even when she’s uncomfortable. If she doesn’t complain, neither do I.”
The disorder also causes Anna’s body to burn calories at a high rate. She needs more than 2,100 calories daily—almost double what most toddlers consume—to keep up with her skin’s growth.
In addition to maintaining Anna’s intense skincare routine, Wilklow juggles frequent occupational and physical therapy sessions. To help with the mounting medical expenses, the family has turned to social media and online fundraising. A GoFundMe campaign, launched by a family friend, has brought in nearly $3,000 so far.
Wilklow shares updates about Anna’s life on Instagram and Facebook, where followers are drawn to the child’s radiant spirit. “She wins people over instantly,” Wilklow said. “Even when her skin is dry or irritated, she’s beaming.”
Reflecting on the journey, Wilklow said her daughter has taught her more than she could’ve imagined. “She’s taught me what real strength and patience look like,” Wilklow said. “Seeing her smile each day reminds me how fortunate I truly am.”