A mother’s heart is filled with excitement, anticipation, and a tinge of uncertainty during the nine months of pregnancy. Expecting parents always hope for a healthy and happy baby to arrive. Life, unfortunately, does not always go as planned.
Jennie Wilklow, of Highland, New York, looked forward to meeting her daughter. Jennie and her husband were overcome with delight as they embraced their new baby. With multiple ultrasounds and doctor’s checkups, everything seemed to be on track for a healthy baby. Little did they know, their darling Anna would be born with a disability that would forever change their lives.
Jennie had a C-section at 34 weeks to deliver Anna. When the medics placed the baby in her arms, she looked into Anna’s eyes and felt a fantastic sensation of love. Everything appeared to be okay with their darling child. However, when Jennie’s husband visited her, his silent and anxious demeanor sent a chill down her spine.
“My husband’s silence frightened me,” Jennie shared with Cafe Mom. “I pressed him for further information, and he sat there in disbelief.” With a sorrowful heart, he said, “It’s bad.”
Jennie couldn’t understand what those words meant at the time. Her thoughts raced, wondering what was wrong.
Anna had harlequin ichthyosis, an uncommon disorder characterized by the appearance of thick, diamond-shaped plates split by large cracks. “As they desperately tried to help her, her delicate skin hardened within seconds of birth,” Jennie explained.
The hardening was followed by severe splitting, leaving her with gaping wounds all over her body. Despite the physicians’ concerns about Anna’s survival, she overcame the odds and thrived. “She embodied pure beauty,” Jennie proudly declared.
Unfortunately, there is no treatment for harlequin ichthyosis. Managing the condition requires consistent effort, including numerous showers and thorough skin moisturization. “I would coat her in Vaseline every few hours and bathe her for hours. I had envisioned all the adorable outfits my baby would wear, and although it seemed trivial, it was one of the things I struggled with the most,” Jennie admitted.
To raise awareness about this disease, Jennie created an Instagram page called “harlequin diva” and shared images of Anna’s journey. Through her posts, she sheds light on the everyday challenges and provides a glimpse into the reality of raising a child with harlequin ichthyosis.
“Anna won many people’s hearts because she embodies perfection in its purest form.” For Jennie, carrying out these regular responsibilities is second nature. “The world celebrates with us at each new milestone,” she told Cafe Mom.
She added, “I now realize that Anna was given to me because of my love for my daughter. We were destined for each other, and together, we will redefine the world’s perception of true beauty.”
Anna is beautiful just the way she is, and she is fortunate to have parents who go above and beyond to ensure she has a fulfilling life. Let’s spread the word about Anna’s story by sharing this article with our loved ones on Facebook. Together, we can raise awareness and celebrate the remarkable strength and beauty that resides within every individual, regardless of their differences.
