Dalip Celbeqiri
Anna, a truly beautiful young girl, faced a rare condition challenging even experienced doctors. Yet, her family remained steadfast, providing unwavering support when she needed it most.
Anna’s arrival completely surprised the new mom and dad.
Excitement filled the hearts of a husband and wife as they anticipated the arrival of their first baby. Jennie Wilklow, the expectant mother, had longed for motherhood and, along with her husband, diligently prepared for a smooth pregnancy. Their fervent hope was for the safe arrival of the little girl who brought them immense joy.
Jennie joyfully selected charming outfits for her future daughter, envisioning the delightful moments of dressing her up. As pregnancy unfolded, everything appeared to be proceeding seamlessly. Routine check-ups revealed no abnormalities, and the couple eagerly counted down the days to welcome their eagerly anticipated daughter into the world.
As Jennie headed to the operating room, she suddenly woke up, reaching for her husband and inquiring about the situation.
“Things were all seemingly perfect. Moments after her skin hit the air it began to harden and then split causing open wounds all over her body,” said the mom. However, moments after birth, the baby’s skin hardened and split, causing wounds all over her body. For months, the skin had been thickening, but exposure to air made it dry and rigid, like armor.
Jennie Wilklow recalls the hospital staff’s astonishment as her daughter’s eyes swelled shut and circulation was cut off in the baby’s hands and feet. Distress was visible among the medical team, and her husband sat silently in the post-op room.
Anna was diagnosed with harlequin ichthyosis, a rare condition causing newborns to develop thick, splitting skin, as described by the First Skin Foundation. This skin hardening transforms an infant’s appearance and can cause lips and eyelids to turn inside out. Additionally, it may lead to constriction around the chest, posing challenges in breathing and eating.
Historically, newborns afflicted with harlequin ichthyosis like Anna typically faced a life expectancy of only a few days.
Medical advancements have enabled individuals with this condition to reach their teenage or even twenties with typical mental and intellectual development. However, severe cases of harlequin ichthyosis in newborns may pose a survival challenge, according to the First Skin Foundation.
Managing this disease demands an intensive approach, focusing on a meticulous skincare routine to maintain skin moisture and softness, preventing infections. Wilklow ensures Anna’s skin is consistently treated with Aquaphor, a healing ointment, applied every few hours.
Wilklow, a resident of Highland, New York, opted to leave her job to become Anna’s full-time caregiver, ensuring she receives comprehensive care. Despite Anna’s numerous challenges, Wilklow finds contentment in her decision, drawing inspiration from her daughter’s resilience to maintain a positive outlook.
Anna’s condition, marked by excessive skin production, necessitates a daily intake of 2,100 calories. Jennie Wilklow details the challenges, stating, “We have to adjust to the heat, the cold, and her skin.” “[We have] her multiple two-hour baths a day and daily caloric needs, and we have weekly occupational therapy and bi-weekly physical therapy.”
“Anna’s personality is always happy and incredibly loving.”
The family actively engages on social media, using platforms like Instagram and Facebook. Wilklow consistently posts updates, creating awareness about the disease and chronicling Anna’s journey.
A poignant moment occurred in May 2023 when they shared a photo showcasing Anna’s remarkable growth from birth. In the caption, the loving parents affectionately referred to her as their “beauty queen” and openly discussed the support they’ve received from others facing the same condition.
Jennie Wilklow shares the profound lessons she’s gleaned from Anna—lessons in self-trust, self-compassion, and the commitment to daily improvement.
Wilklow aspires for Anna’s narrative to inspire others, urging them to find positivity amid challenges. She stresses that happiness is a choice, independent of life’s circumstances. Witnessing Anna’s radiant smile each morning fills her with deep gratitude.
Anna is beautiful! Her story reminds us that true beauty radiates from within. May her resilience and joy inspire us all to embrace the beauty in every chapter of life.
