The nine months a mother carries her baby are meant to be joyful; there shouldn’t even be a hint of unease. The goal of every new parent is for their healthy baby to be welcomed into the world. This isn’t always the case, regrettably.

Jennie Wilklow was looking forward to her daughter’s arrival in Highland, New York. The idea of holding their newborn in their arms made her and her husband utterly giddy. They had felt at ease thanks to the regular exams and healthy ultrasounds.

Which led them to think that the healthy birth of their beloved Anna was guaranteed. They had no idea that the discovery of an unanticipated rare condition would drastically alter their lives.

The couple was silent until Jennie’s husband entered the room, at which point he began to stare.

When the doctor left the room, Jennie was very worried about her husband’s silent and bewildered response. “The doctors and nurses were visibly shaken, and my husband sat silently in the post-op room,” she continued.

The startling prognosis was given. A rare condition known as Harlequin Ichthyosis causes the skin to develop thick, diamond-shaped plates that are divided by large cracks.  “As the medical team scrambled to provide immediate assistance, her delicate skin hardened within seconds of her birth,” Jennie revealed.

“My reaction was just complete shock because just a few minutes before I thought I was having a perfectly healthy baby girl,” she mentioned. “It’s the kind of moment that stays with you forever and reminds you every day just how precious life is.”

“Once it hardened, it started to split, leading to painful open wounds all over her body.” Despite the initial uncertainty surrounding Anna’s survival, she defied all expectations and is now flourishing. “She embodied true beauty,” her mother said, love in her words.

A rare condition called harlequin Ichthyosis necessitates ongoing care.

Harlequin ichthyosis is regrettably incurable, and treatment is difficult, requiring frequent baths and stringent skin moisturization. Wilklow diligently makes sure that Anna takes two-hour baths several times a day to keep her skin from cracking.

She additionally treats Anna’s skin every few hours with Aquaphor, a healing cream. In addition to receiving skincare treatments, Anna also receives occupational and physical therapy.

Anna needs to consume more calories because people with harlequin ichthyosis produce too much skin. She needs to eat about 2,100 calories per day to satisfy her body’s needs. Her overall health and well-being depend on her following this special dietary requirement.

It was once observed that newborns with harlequin ichthyosis frequently had a brief lifespan. Nevertheless, improvements in neonatal care have greatly increased survival rates. “Several” people with harlequin ichthyosis have reached their teenage and twenties years, according to the Foundation for Ichthyosis and Related Skin Types (FIRST).

The fact that some newborns with the condition may not survive persists, though. The skin of people with harlequin ichthyosis can turn red and be covered in thin scales after the thick scales that are present at birth have shed.

Emollients can be used in the course of treatment to help manage the condition’s ongoing symptoms. According to the National Organization for Rare Disorders (NORD), these emollients keep the skin moisturized, preventing the emergence of cracks that might eventually result in infections.

Despite all the challenges she encountered, Jennie persevered and resisted, defending her daughter.

“Anna has captured the hearts of so many because she represents the epitome of perfection in its purest form,” Jennie said. She finds strength in her daily tasks, knowing that she is doing them for her beloved daughter. With each new milestone Anna achieves, the world joins in the celebration alongside her.

Anna is doing well thanks to her caring parents, who will do anything for the child with a rare condition.

Anna, who will turn 6 in September, is doing great. They put in a lot of effort to provide Anna with the best opportunities. attempting to establish a setting where she can flourish and feel normal.

Their unwavering support and love have a significant impact on Anna’s life and enable her to face the world with courage and resiliency.