Bringing new life into the world is a moment of pure joy for any parent. Jennie Wilklow and her husband eagerly awaited the arrival of their daughter, Anna, in Highland, New York. They were filled with excitement at the thought of holding their precious baby in their arms. Regular check-ups and healthy ultrasounds had given them a sense of security – they believed that Anna’s birth would be smooth and without complications.
But life had other plans.
Unbeknownst to them, Anna was born with a rare condition called harlequin ichthyosis, which causes the skin to develop thick, diamond-shaped plates divided by deep cracks. The doctors and nurses in the delivery room were visibly shaken by Anna’s immediate struggle for survival, while Jennie and her husband were left in shock.
“When I thought I was having a perfectly healthy baby girl just moments ago, the sudden reality hit me like a ton of bricks,” Jennie recounted. “It was a moment that will forever stay with me, a reminder of how precious life truly is.”
Anna’s delicate skin hardened within seconds of her birth, leading to painful open wounds all over her body. Harlequin ichthyosis is an incurable condition, requiring ongoing care and treatments. To prevent her skin from cracking, Jennie diligently gives Anna two-hour baths multiple times a day and applies Aquaphor healing cream every few hours. In addition, Anna undergoes occupational and physical therapy to support her overall well-being.
Managing Anna’s condition also involves a specific dietary requirement. People with harlequin ichthyosis produce excessive amounts of skin, so Anna needs to consume around 2,100 calories per day to meet her body’s needs. Following this special dietary regimen is crucial for her health and growth.
In the past, newborns with harlequin ichthyosis often had a short lifespan. However, advancements in neonatal care have greatly improved survival rates. Some individuals with this condition have reached their teenage and twenties, defying the odds. Nevertheless, there is still a risk, and constant care and monitoring are essential.
Moisturizing the skin with emollients and regularly bathing with care can help manage the ongoing symptoms of harlequin ichthyosis. These measures prevent cracks and potential infections, keeping the skin moisturized and healthy.
Despite the challenges they face, Jennie and her husband remain unyielding in their love and support for Anna. She is their inspiration, their beacon of strength. Jennie describes Anna as “the epitome of perfection in its purest form,” and she finds solace in the daily tasks she undertakes for her daughter. Every milestone Anna achieves is a cause for celebration, not just for the family but for all those whose hearts she has touched.
Today, Anna is a happy child, approaching her sixth birthday in September. Her parents, with unwavering dedication, create an environment where she can flourish and feel loved. Their support has a profound impact on Anna’s life, allowing her to face the world with courage and resilience.
In the face of adversity, a mother’s love is a powerful force that can conquer all. Jennie’s love for her precious daughter Anna is a testament to the strength and resilience of the human spirit, and it serves as an inspiration to us all.
