New York mother, Jennie Wilklow, recently wrote a touching article on Love What Matters about her daughter Anna’s rare genetic skin condition, harlequine.
Just moments after her daughter Anna was born, she learned that her young daughter was born with a rare and devastating genetic condition.

When the nurses and doctors saw what happened to the baby, they were completely shocked. Due to the newborn baby’s skin hardening and starting to crack, the doctors reassured Jennie that the situation was still under control.

But looking at her husband, she realized something was seriously wrong:
“My husband’s silence scared me, he was only shocked when the doctor left. He kept saying, “This sucks.”

Harlequin ichthyosis is an inherited, incurable skin disease that causes the skin to grow 14 times faster than normal and the disease is so rare, many babies ∂ιє soon after birth.

There can also be complications and problems in the development process, especially when it comes to motor skills.
Jennie talked about how hard their first days were after they moved into the same house.

“Every two hours, I put Vaseline on her and I bathe her for a few hours every day. For years, I dreamed of what my beloved daughter would wear, and while that may seem trivial, it’s what I’ve fought for the most.

I began to realize that if I limit what she can achieve, it will hinder her growth. That’s why I decided to put the list up high. I decided that the goal should be for her to be able to do whatever she wants, and so should my goal.”

Jennie created her own Instagram account to document Anna’s life, with its ups and downs in daily life.

“I understand now that I got her because of the love I have for my daughter. Anna is for me, and I am for her. Together, we can show the world how beautiful it is,” wrote Jennie.

It is important to keep the skin soft to avoid dryness and tightness. Tight skin leads to reduced mobility and the risk of infection that occurs from cracks and wounds. Help with care may be needed throughout life.

It’s great to see how strong and beautiful she has become. A beautiful girl with her whole life ahead of her. Please share this touching story with your friends.