A mother’s heart brims with excitement, anticipation, and a hint of uncertainty throughout the nine months of pregnancy. Expectant parents eagerly await the arrival of a healthy and happy baby, though life often unfolds in unexpected ways.
In Highland, New York, Jennie Wilklow eagerly awaited the birth of her daughter. Together with her husband, they joyously embraced the prospect of welcoming their new addition. Multiple ultrasounds and doctor’s checkups had provided reassurance of a healthy baby, calming their minds.
However, their joy turned to unexpected sorrow when Anna, their darling daughter, was born with a disability that would shape their lives indefinitely. Jennie underwent a C-section at 34 weeks, and upon holding Anna in her arms, she felt an overwhelming sensation of love.
Despite appearances, a silent and anxious demeanor from Jennie’s husband hinted at unforeseen challenges. As the doctor left the room, he uttered, “It’s bad,” leaving Jennie bewildered and anxious.
Anna had harlequin ichthyosis, a rare disorder characterized by thick, diamond-shaped plates split by large cracks. Jennie recounted to Cafe Mom how Anna’s delicate skin hardened within seconds of birth, followed by severe splitting and gaping wounds.
Although doctors expressed concerns about Anna’s survival, she defied the odds and thrived. Jennie proudly declared, “She embodied pure beauty.”
Regrettably, there’s no cure for harlequin ichthyosis, requiring diligent efforts such as frequent showers and thorough skin moisturization. Jennie, facing the challenge head-on, created an Instagram page, “harlequin diva,” sharing Anna’s images to raise awareness about the disease and shed light on the daily struggles of raising a child with harlequin ichthyosis.
Jennie admitted grappling with the trivial yet emotional aspect of envisioning adorable outfits for her baby. Through her posts, she not only showcases Anna’s milestones but also reveals the reality of living with harlequin ichthyosis.
“Anna won many people’s hearts because she embodies perfection in its purest form,” Jennie expressed. For her, the routine responsibilities are second nature, and the world joins in celebrating each new milestone.
Reflecting on her journey, Jennie now recognizes that Anna was a gift destined for her, and together, they aim to redefine the world’s perception of true beauty. Anna is beautiful just the way she is, and her parents, going above and beyond, ensure she leads a fulfilling life.
Let’s share Anna’s story to raise awareness, celebrating the strength and beauty within every individual, irrespective of differences. Together, we can spread the word on Facebook and celebrate the remarkable journey of Anna and her family.