A mother’s heart is filled with excitement, anticipation, and a tinge of uncertainty during the nine months of pregnancy. Expectant 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
They had had multiple ultrasounds and doctor’s checkups, all suggesting a healthy baby.
This reassurance put their minds at ease, and they had no idea that their darling Anna would be born with a disability that would affect their lives forever.
Jennie had a C-section at 34 weeks to deliver Anna. She looked into Anna’s eyes when the medics placed the baby in her arms and felt a fantastic sensation of love.
Everything appeared to be okay with their darling child. However, when Jennie’s husband visited her, his quiet and anxious demeanor sent a chill down her spine.
“My husband’s silence frightened me,” Jennie told Cafe Mom. I pressed him for further information as the doctor left the room, and he sat there in disbelief.” With a sorrowful heart, he said, “It’s bad.”
“Jennie,” her husband said, “I looked into her eyes, and she has the most beautiful soul.” Jennie couldn’t understand what those words meant at the time. Her thoughts raced, wondering what was wrong.
Anna had harlequin ichthyosis, an unusual 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 to Cafe Mom.
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 declared proudly.
Unfortunately, there is no treatment for harlequin ichthyosis. The treatment necessitates 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.
She developed an Instagram page called “harlequin diva” and uploaded images of Anna to raise awareness about this disease. 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 her, carrying out these regular responsibilities is second nature. “The world celebrates with us at each new milestone,” Jennie 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 we will redefine the world’s perception of true beauty together.”
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.