The nine months a mother carries her baby should be a time of joy and excitement, not uncertainty. Expecting parents dream of the day they can hold their healthy newborn in their arms, filled with relief and happiness. Unfortunately, this ideal doesn’t always become reality.
In Highland, New York, Jennie Wilklow was eagerly anticipating the birth of her daughter, imagining the overwhelming joy of meeting her baby for the first time. With a series of healthy ultrasounds and routine check-ups, Jennie and her husband felt reassured that their baby, Anna, would be born healthy.
A Shocking Diagnosis
However, their world was turned upside down after Anna's birth. Jennie underwent a C-section at 34 weeks, and the moment she heard her daughter’s first cry, she felt a wave of relief, thinking that everything was as it should be. But as soon as Jennie’s husband entered the room, the mood shifted. His stunned silence left her uneasy as he stood motionless, his face full of shock.
Jennie’s heart raced as she asked him what was wrong. His response only deepened her confusion. “It’s bad,” he repeated, his voice heavy with meaning. Then, he added, “Jennie, I looked into her eyes, and she has the most beautiful soul.”
The unexpected news soon followed. Anna was born with harlequin ichthyosis, a rare condition that causes thick, diamond-shaped skin plates separated by deep cracks. As Anna’s fragile skin began to harden moments after birth, Jennie was in shock. Just seconds before, she had thought she was welcoming a perfectly healthy baby girl. “It’s a moment that stays with you forever,” Jennie said. “It reminds you every day how precious life is.”
Anna’s Struggle and Strength
Anna’s skin began to crack immediately, leading to painful open wounds. Despite a grim prognosis, Anna defied the odds and is now thriving, with her mother describing her as the embodiment of beauty.
Harlequin ichthyosis requires constant, intensive care, and unfortunately, no cure exists. Anna’s treatment regimen includes multiple two-hour baths each day, followed by moisturizing her skin with ointments like Aquaphor. Her care also includes physical and occupational therapy. Due to the condition’s excessive skin production, Anna must consume around 2,100 calories per day to maintain her health.
While babies born with harlequin ichthyosis once had a very short life expectancy, advancements in neonatal care have greatly improved survival rates. According to the Foundation for Ichthyosis and Related Skin Types (FIRST), some individuals with the condition live into their teens and even twenties. However, the condition can still be fatal for some newborns. Once the thick, diamond-shaped scales shed, the skin turns red and forms thinner scales, which can be managed with emollients to prevent cracks and infections.
Raising Awareness and Celebrating Her Journey
Despite the challenges, Jennie has stayed strong for her daughter, using her Instagram page, @harlequindiva, to raise awareness and share their journey. She posts touching photos of Anna, capturing both the daily struggles and victories of raising a child with this rare condition.
“Anna has captured the hearts of so many people because she is the epitome of perfection in its purest form,” Jennie said. As Anna continues to reach new milestones, Jennie and her family celebrate each achievement with immense pride.
A Family’s Bond and the Meaning of True Beauty
Looking back on their journey, Jennie now understands that Anna was entrusted to her because of the deep, unconditional love she already had for her daughter. “Our destinies are intertwined, and together we will show the world what true beauty really means,” Jennie reflected.
Thanks to her devoted parents, Anna is thriving. As she approaches her sixth birthday, Anna is flourishing, supported by the love, care, and opportunities her parents have provided. Jennie and her husband remain committed to ensuring that Anna can lead a fulfilling life, helping her navigate the world with strength, courage, and resilience.
