During the nine months of pregnancy, a mother’s heart is full of excitement, anticipation and uncertainty.
Pregnant women always expect a healthy and happy baby. Unfortunately, life doesn’t always go as planned.
Jenny Wilclow of Highland, New York, was looking forward to meeting her daughter. Jenny and her husband were overjoyed to hold their new baby.
They underwent several ultrasounds and health examinations, and the results showed that the baby is healthy.
This assurance reassured them, little did they know that their sweet Anna would be born with a disability that would affect their lives forever.
Jenny had a C-section at 34 weeks to give birth to Anna. He felt an incredible sense of love as he looked into Anna’s eyes as the doctors placed the baby in her arms.
All seemed well for their adorable little boy. But when Jenny’s husband visited, his calm, concerned demeanor sent shivers down her spine.
Jenny told Cafe Mom: “I was scared because of my husband’s silence.” When the doctor left the room I asked him for more information and he just sat there in disbelief. “It’s too bad,” he said with a sad heart.
“Jenny,” her husband said. “I looked into her eyes and her soul was the most beautiful.” Jenny didn’t understand what that meant at the time. His heart was racing, not knowing what was happening.
Anna suffered from Harlequin ichthyosis, a rare condition that causes thick, diamond-shaped plaques separated by large fissures.
“When they tried to help him, his sensitive skin froze seconds after birth,” Jenny explained to Cafe Mom. As it hardened, severe cracks formed, leaving large scars all over the body.
Despite doctors’ concerns about Anna’s survival, she overcame her difficulties and thrived. “She is the epitome of pure beauty,” Jenny said proudly. Unfortunately, there is no cure for harlequin ichthyosis.
Treatment requires continuous efforts, including frequent showers and complete hydration of the skin. “Every few hours I would apply Vaseline and take a bath for a few hours.
“I used to imagine all the cute clothes my baby would wear, and as mundane as it sounds, it was one of the things I struggled with the most,” admitted Jenni. She created an Instagram page called “harlequin diva” and uploaded photos of Anna to raise awareness of the disease.
Through her writing, she highlights the day-to-day challenges and provides insight into the realities of raising a child with harlequin ichthyosis. “Anna won the hearts of so many people because she represented perfection in its purest form.”
Performing these routine tasks is second nature to him. “The world celebrates each new milestone with us,” Jenny told Cafe Mom. He added: “Now I understand that Anna was given to me because of my love for my daughter.
“We were meant to be together and together we will redefine the world’s perception of true beauty.”
