baby-in-pink-with-flower-head-wrap

By Alexus Abney

I live in a small town in Iowa of about 20,000 people, where most people know one another. On September 5, 2019, I was 35 weeks exactly. I went on with my day thinking of the nice weather outside. It was a beautiful, sunny day. I remember it all too well.

Around 4 p.m. that day, my world was about to change. I didn’t think much of it until my fiancé and I arrived at the hospital to deliver a little girl, our very first child. Around midnight on September 6, my world was about to shift again, as we did not know what was about to happen to our little girl.

Our World Changed

It was almost one in the morning when our daughter arrived. My fiancé’s and my little world had an immediate, drastic change. My daughter, Lily, was so very red, with peeling skin, eyes that were fused shut, a cleft palate, and webbed toes on her right foot.

Alexus with her fiancé, Jacob, and their daughter, Lily. Lily has erosions on her scalp that cause redness.

Her head was extremely raw, almost like she had second degree burns. Lily was transported to an area hospital about an hour and a half away from our small Iowa town.

Lily’s Diagnosis

During Lily’s stay in the NICU unit, multiple doctors were trying to figure out why Lily was different from all of the other babies. They had never seen anything like this before in their lifetime nor in their career of medicine. I was even trying to figure out what could have been so different in my pregnancy that I may have missed.

Blood tests were being sent across the country during our NICU stay, but they took weeks to get back. On day 34 of Lily’s NICU stay, we finally got answers. We learned that Lily has ankyloblepharon-ectodermal defects-cleft lip/palate (AEC) syndrome.

Most people don’t understand Lily’s condition, because they have never heard of it. As a mom, Lily has given me more strength than anyone else ever could. Lily has reminded me to always count my blessings, because things could have been much worse, but I am so glad they weren’t.

As Lily gets older, she will learn a lot about her condition, and thankfully we have so much support out there from other AEC parents, AEC patients, and the National Foundation for Ectodermal Dysplasias.

She Is Just Like Anyone Else

Lily is no different than any other person in this world. She will always be there for anyone as she gets older, just like how everyone is there for her. Everyone that looks at Lily doesn’t look at her in a different way, they look at her as a beautiful little girl. She always puts on a smile on everyone’s face and that gives me hope for Lily’s future.

Lily is going to change the world one day and she will always will be there for everyone!


– Alexus Abney is a guest blogger for the NFED. She lives in a small town in Iowa with her fiancé, Jacob, and Lily.


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2 comments on “Blessed On A Sunny Day”

  1. 1
    Katie Anderson on May 14, 2020

    Thank you for sharing Lily with us! She is so adorable, and that smile.❤ Wishing you many blessings as you navigate life with this little sweet pea.

    1. 2
      Jodi Edgar Reinhardt on May 14, 2020

      Isn’t her sweet smile the best?! We agree. ~ Jodi, NFED, Director, Marketing and Communications

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