This baby was born with a very rare disease, but that won’t stop her mom from loving her with all her heart.
Jennie Wilklow had a perfectly normal pregnancy until she went into labor at 34 weeks.
Even then, there was no cause for concern. She underwent a successful C-section, but then moments after giving birth it was clear something was very wrong with her baby.
The baby was suffering from a rare disease called Harlequin Ichthyosis.
As they tried frantically to help her, her skin hardened within seconds. After hardening, it began to split, causing open wounds all over her body. Behind the curtain I began to sense their frantic, panicked feeling, and I asked if things were OK. They told me yes and asked if I wanted more medicine to calm me; after that, I was out for the rest of what occurred.
The doctors told Jennie that they didn’t think her baby would survive.
But Jennie knew survival was the only option for Anna:
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.
Anna is home and well and the ordeal has given Jennie a new perspective on life.
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.
She continued, ” 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.”
Jennie says Anna has taught her to appreciate every day and to focus on celebrating the positives in life.
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.
Harlequin-type ichthyosis is a genetic disorder and is noticed at birth. The baby is born with thickened skin that then hardens and breaks apart in deep cracks.
The baby’s movements are limited and the shape of their face is affected by the disorder. Affecting about 300,000 births , there is no cure for harlequin-type ichthyosis.
Jennie writes on her Instagram that while she knows there is no cure, she says she’s happy for every day she has with Anna.
“I think the thing I struggle with the most is constantly being caught between working towards a cure and accepting that there may never be one. Meeting people at this party and hearing their stories, today I’m just breathing and rejoicing that she can sit on the floor with other kids and wait for Santa.”
“I’m smiling at her full head of curls and her sweet fluffy dress that I’ve waited months to be able to match her in.”
“Today I am happy for today and I know that even if they don’t find a cure, the work put in will never be in vain.”
Anna has raised awareness of the disorder.
Jennie notes in her story on Cafemom that the news your child has a life-threatening, rare condition can come on “just like that”:
“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. “
Jennie writes that Anna’s family has raised about $10,000 for firstskinfoundation.org.
Wilklow says she rejoices in the small moments.
While it’s heartbreaking to see how the disease has affected Anna, Jennie’s story may bring a wider audience to the condition, and hopefully, someday a cure can be found.
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An organization called FIRST is also there to support families with ichthyosis.
The goal of Foundation for Ichthyosis and Related Skin Types, or FIRST, according to their site, is to provide support and resources for families with ichthyosis.
To learn more, visit www.firstskinfoundation.org .
