She recently wrote a moving piece about her daughter's rare genetic skin condition harlequin ichthyosis.

By Maressa Brown
December 21, 2018

December 19, 2018

Upon welcoming your little one into the world, there's really only one question you want answered: Are they in good health? After all, even if a baby seems well in utero, a health concern may present itself in the moments following their delivery. For a mother from Highland, New York named Jennie Wilklow, it was just moments after her daughter Anna was born that she learned her little girl was born with a rare and debilitating genetic condition called harlequin ichthyosis. Wilklow recently detailed the experience in a piece for Love What Matters.

RELATED: What Is Harlequin Ichthyosis? Mom Bathes Her Baby in Bleach Because of This Rare Genetic Disorder

"As I sat alone in a hospital room in shock staring at the wall in front of me, my brain was on repeat," Wilklow wrote. "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 breech. It was all very calm and wonderful—until it wasn’t."

She noted that harlequin ichthyosis is not a condition that "most people, even those in the medical profession, are familiar with." When Anna was born, "her skin hardened within seconds. After hardening, it began to split, causing open wounds all over her body," Wilkow shared. "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."

RELATED: 4 Skin Conditions That Can Signal Other Health Problems

In the wake of this incredibly emotionally challenging turn of events, Wilkow observed that "your decisions in these moments define who you are and what you become." She revealed that she spent most of the next two days following Anna's birth "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."

The little girl stayed in the NICU and was "a fighter," Wilkow shared. 

But there was definitely a shift for Wilklow once she got home with her little girl, she admits. "I was very positive in the hospital, but once home it felt like I was drowning," she tells Parents.com.

Given time and support, the proud mom said she "decided to focus on what I could have and not what I couldn’t." She decided that she would make the best of everything: "I decided that if Anna could wear only fleece, then I would pick the cutest fleece pajamas I could find, and I would match her hat every day," she wrote. "As time went on, Anna’s skin shed the extra layers, and I became more confident in caring for her. My sister and I tried every type of lotion and oil. For her head, I worked for hours to remove the extra skin. Unfortunately, with it came all of her hair. I set small goals, and each time I reached one, I celebrated in a big way." 

Wilklow observed that "when you have a child with any type of disability, you find yourself rejoicing in even the smallest moments." She said she "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."

These days, the loving mom says she still has difficult moments. "I still go out and see little girls running and playing and think about Anna in the heat and how she won’t be able to do everything," Wilklow tells Parents.com. "I still get these moments I feel like I've been punched in the stomach when I see people's newly born babies in the hospital. Each time, I just stop myself and choose to focus on what she can do and what I can change."

RELATED: Skin Conditions, Explained

And in her Love What Matters piece, she writes that "doing the work every day is simple when I’m doing it for her, and with every new accomplishment, the world celebrates with me. Anna teaches me every day to focus on the all of the positives, and the rest just falls into place."

Heartbreakingly, she admitted that she once blamed herself for Anna's condition. "I thought it was the consequence of my greed because I wanted her so badly, even though my world was already perfect," Wilklow wrote. "I now understand that I was given her because of the love I already carried in my heart for my daughter. Anna was meant for me, and I for her, and together we will show the world what true beauty is."

And that's exactly what she and her beautiful daughter are doing, thanks to their heartwarming, viral story.

"I think of the people she has helped and all of the emails and messages I get of people thanking me and her," Wilklow tells Parents.com. "She has done more for people in her lifetime than I could ever do. You basically have to wake up each morning and make a choice to be thankful for everything you have. Absolutely never take good enough as an answer and let the bad go."

To support the Wilklows' journey, check out their "Hope for Anna" GoFundMe.

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