Dear little girl. I've seen documentaries about the suffering that these precious children experience with their daily struggles to keep their skin hydrated ... So cruel for children to have to suffer like this.
Parents Left Shocked by Their Newborn’s Look — Now She’s 6 and They Call Her a Little “Beauty Queen”
Introducing Anna, a remarkably lovely girl who faced an exceptionally rare medical condition, one that even medical professionals had limited expertise in. Nevertheless, her family consistently provided unwavering support whenever she required it the most.
The newly minted parents were completely taken aback when their daughter came into the world.
A couple eagerly anticipated the arrival of their first child. The expectant mother, Jennie Wilklow, had longed to embrace motherhood, and she and her husband had diligently readied themselves for the pregnancy, holding high hopes for a smooth journey that would bring them the cherished little girl they were so excited to welcome.
Jennie went the extra mile by selecting adorable outfits for her soon-to-arrive daughter, daydreaming about the moment when she’d cradle her baby and lovingly dress her in the meticulously chosen ensembles. As her pregnancy progressed, everything appeared to be on track. Routine check-ups revealed no cause for concern, and the couple eagerly anticipated the imminent arrival of their long-awaited daughter.
On her way to the operating room, Jennie woke up, reached for her husband, and asked if everything was okay.
“Things all seemed perfect at first. Moments after her skin was exposed to the air, it began to harden and then split, causing open wounds all over her body,” recounted Wilklow, 34, about her daughter’s birth in September 2017. For months, the baby’s skin had been gradually thickening, but upon exposure to the air, it transformed into a dry, rigid shell resembling armor.
Jennie Wilklow vividly recalls the astonishment that swept through the hospital staff as her daughter’s eyes swelled shut, and the baby’s hands and feet lost their circulation. Distress was palpable among the doctors and nurses, while her husband sat in stunned silence in the post-op room.
Anna was diagnosed with harlequin ichthyosis, an uncommon condition in which newborns develop thick, splitting, and cracking plates of skin around their bodies, as described by the First Skin Foundation.
This skin hardening significantly transforms an infant’s appearance and can cause their lips and eyelids to invert. It can also lead to constriction around their chest, making breathing and eating a challenging endeavor.
In the past, infants born with harlequin ichthyosis usually didn’t survive more than a few days after birth.
Gosh, Anna looks so much like her Dad! ... & obviously extremely loved and doted on by her parents!
However, thanks to medical progress, many individuals with this condition have been able to live into their teenage years or even into their twenties with normal mental and intellectual development. Nonetheless, the First Skin Foundation notes that some newborns with severe harlequin ichthyosis may not survive.
The treatment for this disease is highly intensive and involves a meticulous skincare routine to keep the skin moisturized and soft, preventing infections. Wilklow diligently applies Aquaphor, a healing ointment, to Anna’s skin every few hours.
Hailing from Highland, New York, Wilklow made the heartfelt decision to leave her job and become a full-time caregiver for Anna, ensuring she receives all the necessary care. She expresses contentment with her choice, recognizing that Anna confronts numerous challenges. Nevertheless, Anna’s resilience serves as a source of inspiration for her mother to maintain a positive outlook.
Because of Anna’s excessive skin production, she requires a substantial daily calorie intake of 2,100 calories. Jennie Wilklow explains, “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,” Wilklow says of her daughter.
She's beautiful!!
Now, the family is actively engaged on social media, with Wilklow routinely posting updates on their Instagram and Facebook profiles to increase awareness about the disease and chronicle Anna’s journey.
In May 2023, they posted a photo that showcased Anna’s remarkable growth since her birth. In the caption, the loving parents affectionately referred to her as their “beauty queen” and openly discussed the support they had received from individuals living with the same condition.
Anna, you have the most beautiful dresses. You are so pretty in them. You are very pretty no matter when you are wearing.
Jennie Wilklow shares that she has gleaned invaluable lessons from Anna, such as self-trust, self-compassion, and the commitment to daily improvement.
Wilklow aspires for Anna’s story to inspire others, motivating them to concentrate on the positive aspects of life even in the face of adversity. She underscores that happiness is a choice not solely dictated by life’s circumstances. Every morning, when she wakes up to see Anna’s radiant smile, she feels a profound sense of gratitude.
So adorable.
Anna is indeed incredibly beautiful. Before we conclude, I recommend taking a look at another article about a girl born without a nose who was once referred to as “Voldemort.” With the unwavering support of her loved ones, she now confidently embraces her uniqueness.