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Mom Quits Job After Daughter Is Born With Rare Skin Condition. She Requires a Bath Several Times a Day

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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.

Wilklow said:

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.

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

A post shared by Jennie (@harlequindiva) on

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.

Wilklow said:

“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.”

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  1. Heavenly Father, You said, “Suffer the little children to come unto Me and do not prevent them, for the Kingdom of Heaven belongs to such as these.” And “By Your stripes we are healed.” You are the Balm in Gilead. So, I pray You will touch this innocent child immediately and heal her completely from the ravages of this vicious disease. Let Your grace fall on her, Lord. In Your mercy and compassion, restore her health so that she can experience a normal and happy life free of disease and distress. Please also restore her parent’s joy and free them from the bondage of sadness, anxiety, powerlessness, weariness, and financial stress. Where we are weak, You are strong. One touch from You is my prayer. Thank You, Lord, for hearing my petition and for acting on it. I pray all of this to You, Jesus, in Your Great Name, by the Power of the Holy Spirit. Amen.

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