Jennie Wilklow from Highland, New York, was thrilled to meet her baby girl, Anna. All check-ups had been normal, and she expected a healthy delivery. But moments after giving birth at 34 weeks, Jennie’s husband appeared stunned. “It’s bad,” he whispered, then added, “Jennie, I looked into her eyes, and she has the most beautiful soul.”

Anna was born with harlequin ichthyosis, a rare disorder where thick, cracked skin forms immediately after birth. Jennie recalled, “It’s a moment that stays with you forever. It reminds you every day how precious life is.” Anna’s skin split painfully, and doctors warned of a grim prognosis.

But Anna defied expectations. With constant care—including two-hour baths, skin ointments, therapy, and a 2,100-calorie diet—she is thriving. There’s no cure, but improved care has helped more children with this condition live longer lives.

Jennie now shares Anna’s journey on Instagram (@harlequindiva), raising awareness and showing the world her daughter’s strength. “Anna has captured the hearts of so many because she is the epitome of perfection,” Jennie said. As Anna nears her sixth birthday, she continues to inspire, surrounded by love and unwavering support.