A New York woman practically had no choice other than becoming a stay at home mom after learning of her baby girl’s condition.
According to People, Jennie Wilklow, 34, gave birth to her daughter, Anna, via C-section in September 2017. Just minutes after entering the world, Anna’s skin began to thicken and crack.
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. For months her skin had been building up but now out of the womb it became dry and hard, like armor.”
Anna’s eyes swelled shut and she lost circulation in her hands and feet. The mother recalled the hospital staff being “visibly shaken,” while her “husband sat silently in the post-op room.”
As it turns out, Anna suffers from a rare condition called Harlequin ichthyosis.
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I’m sorry I’ve been mia. Anna and I are fighting this dry winter weather as hard as we can. While we try hard to get back to a good skin cycle we keep finding ourselves back in the water. The only tried and true method to relieving her dryness, but as usual her joy filled personality keeps me going ??#harlequindiva #fighter #nevergiveup #alwayshappy #skindisorder #harlequinichthyosis #ichthyosisawareness
As the First Skin Foundation reports, the disorder causes infants to develop thick plates of skin that crack and split apart. The tightness of the skin can disfigure the child’s facial figures and make it hard for the child to eat and breathe. In the past, infants with the condition did not survive many days after birth.
However, medical advancements have allowed many infants with harlequin ichthyosis to live well into their teenage years and even adulthood with normal mental and intellectual growth.
As the First Skin Foundation reports, treatment for the disorder is often time-consuming and “meticulous.” The skin regimen requires intense moisturization of the skin and may even include antibiotics to prevent infection.
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With a heavy heart I started to mend, stitching the remaining pieces of my heart back together. The pain had left my heart in so many pieces shattered all over the place. I searched and searched but couldn’t find all of them. Everything I put back into place felt like such a relief and each time a new stitch was sewn I was able to breathe one more time. There was that hole though, the piece I couldn’t find. The one thing leaving such pain in my chest. The tears seemed always on the edge of flowing but determined I pushed them back. I knew I was capable,I knew I was strong, I knew deep inside it would take much more to break me. I defined things, they would not define me. Maybe that hole was never meant to be completely fixed. Maybe instead it was meant to be patched. The type of patch that is exciting and colorful and makes things even better then they once were. Maybe instead of constantly trying to fix something that’s broken, people should make something entirely different, better even. #myHQD #myanna #harlequinichthyosis #oldjournalentries #weareunbreakable
In order to maintain Anna’s skincare regimen, which includes lathering in healing ointment every few hours, Wilklow quit her job.
The mother explained:
“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. She has a lot of challenges, but she never complains so neither do I.”
In addition to ointment, Anna consumes 2,100 calories daily and requires extensive baths.
“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.”
As People reports, a family friend has set up a GoFundMe to help Wilklow raise money for Anna’s medical expenses. So far, the page has raised over $6,000.
Despite her hardships, Wilklow describes Anna as “always happy and incredibly loving.”