During the nine months of pregnancy, a mother’s heart is filled with excitement, anticipation, and a hint of uncertainty. Expectant parents always hope for a healthy and happy baby. Unfortunately, life doesn’t always go as expected.
Jennie Wilklow, from Highland, New York, eagerly awaited the arrival of her daughter. Both Jennie and her husband were overjoyed as they welcomed their new baby.
They had multiple ultrasounds and doctor’s checkups, all indicating a healthy baby.
This reassurance put their minds at ease, and they had no idea that their beloved Anna would be born with a condition that would change their lives forever.
Jennie had a C-section at 34 weeks to deliver Anna. When the medics placed the baby in her arms, she felt an overwhelming sensation of love as she looked into Anna’s eyes.
Everything seemed fine with their precious 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 more 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, a rare disorder characterized by thick, diamond-shaped plates separated by deep 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 doctors’ concerns about Anna’s survival, she defied the odds and thrived. “She embodied pure beauty,” Jennie declared proudly.
Unfortunately, there is no cure for harlequin ichthyosis. The treatment requires consistent effort, including frequent showers and thorough skin moisturization. “I would coat her in Vaseline every few hours and bathe her for hours,” Jennie admitted.
“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 said.
She started an Instagram page called “harlequin diva” and shared images of Anna to raise awareness about this condition. Through her posts, she sheds light on the everyday challenges and offers 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 tasks 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.
Let us share Anna’s story with our loved ones on Facebook. Together, we can raise awareness and celebrate the remarkable strength and beauty within every individual, regardless of their differences.
