Jennie Wilklow said things were “seemingly perfect” when her daughter Anna was born via C-section in September 2017. But everything changed in an instant. According to the people, the now 16-month-old was born with a condition that made her skin crack open just minutes after birth.
“As I sat alone in a hospital room in shock staring at the wall in front of me, my brain was on repeat. I just kept hearing, ‘What just happened?’ Visions of my daughter, the little girl I had thought about, prayed about, and planned for years for was here, finally. But the moment that was supposed to complete my family, the last piece in the most beautiful puzzle, was suddenly gone–not just like the piece needed to be flipped over gone, but instead, like someone picked up the puzzle and smashed it, gone. Broken and alone, all I could do was stare, and picture her body in my arms. I had a normal pregnancy up until my water broke at 34 weeks. Still her stats were great, and we had a C-section because she was breach. It was all very calm and wonderful–until it wasn’t. When they took her out, I heard her cry, and they said, ‘She is beautiful.’ Those are the words every mother wants to hear, so I smiled and relaxed. Behind that curtain though, things were becoming very terrifying.” said Jennie Wilklow.
Anna was soon diagnosed with Harlequin ichthyosis, a rare skin condition in which infants are born covered in thick scales of skin, according to the National Organization for Rare Disorders (NORD). It affects approximately one in 500,000 individuals.
Babies born with the condition are covered in thick skin scales. The skin’s tightness can pull on the eyes and mouth, making the lips and eyelids turn inside out, or pull across a baby’s chest and abdomen, causing breathing and eating difficulties, according to the NORD. In the past, babies with the condition often did not survive long after birth, People noted in its report.
Let’s listen to what a mother whose A Baby Girl Who ‘Never Stops Smiling’ Is Living With a Rare Condition That Makes Her Skin Crack shares about what she and her family suffered in the past to understand more about this disease.
“Broken is the only way to describe the feeling as they placed her body in my arms. For months her skin had been growing at an accelerated rate and all at once, upon hitting the outside air, it began to dry. Her fingers were being squeezed and turning blue and her toes were on the bottom of her feet from the skin being so tight. Everyone was frantically trying to diagnose her, but they had never seen anything like this. She was fine; everything was perfect, and then it wasn’t–just like that.
What is so scary about any tragedy or trauma is that it happens just like that. Things are fine (perfect even), and then suddenly they are not. Your decisions in these moments define who you are and what you become. I spent most of the next two days trying not to look up her condition and thinking how she would have zero quality of life if she lived. I allow myself to admit this thought because it was only in that moment, at the most confused and alone time of my life, that I thought maybe she would be better off dead? That question came into my head more than once, and I tried to focus on other things. People came in and out they told me stories of other people with this and how great they were doing. It seemed everyone had looked it up but me because I still wasn’t ready. My husband came to get me from the hospital and bring me to Anna, and as he sat next to me, he told me how the doctor didn’t give her much if any chance of surviving. He thought he could probably keep her alive until I got there to see her. My heart stopped, and I became immediately sick. I had never been more affected by any words I had ever heard in my life. I decided at that moment that my Anna couldn’t and wouldn’t die because, to put it simply, I would never be ready for that. If the feeling I had just experienced were to last for more than a fleeting moment, then I would never recover if she died.
My Anna was a fighter. The NICU was easy, and she did amazingly with everything. Days later, when I saw her eyes for the first time, I remembered what my husband had said. I remember being completely captivated with her and how I never saw what other people saw. She was beauty in the purest form.
To keep her skin from cracking, Anna is covered in healing ointment and bathed multiple times a day
To keep Anna’s skin from cracking, Wilklow gives her two-hour baths multiple times a day and covers her in the healing ointment Aquaphor every few hours, People reported. Anna also receives occupational and physical therapy, and because her body produces so much extra skin, she needs to eat around 2,100 calories every day, People’s report added.
“I decided to stop work and stay home with her full time to give her everything she needs and I couldn’t be happier with my decision,” Wilklow told People. “She has a lot of challenges, but she never complains so neither do I.”
After Wilklow left her job to care for her daughter, a family friend set up a GoFundMe to raise money for Anna’s medical expenses, according to People. As of this writing, donors have contributed more than $10,000.
Thousands of people follow Anna’s story on social media
Anna has captured thousands of hearts on social media. The family maintains a Facebook page titled “Hope for Anna” with 210,000 likes, and an Instagram profile (username: @harlequindiva) with more than 143,0000 followers. Each page is populated with photos and videos of Anna playing, eating, and smiling. Other photos offer a glimpse into Anna’s daily care regimen and her skin symptoms.
So far, Anna’s online presence has also helped raise more than $10,000 for ichthyosis research, according to Wilklow.
“She is so happy all of the time and just never stops smiling,” Wilklow told INSIDER. “I want others to see Anna and understand that life isn’t about the obstacles but about the grace in which you overcome them.”
When you have a child with any type of disability, you find yourself rejoicing in even the smallest moments. I started to realize that if I put restrictions on what she was capable of, then that would become what she would accomplish, so I decided to set the bar high. I decided she was capable of anything, and so was I. I remember the first day she wore jeans–how excited I was to put different fabrics on her skin, how hats turned into headbands, as I was able to get her hair to grow again. Small steps felt like giant leaps, and I made a decision to share Anna with the world.