Vivian’s Story

Site created on February 7, 2022

Welcome to Vivian’s care site for updates. We have been so loved by your prayers and encouragement, and we have been trying to tell her all the messages from people too.

We are so smitten and are quite fond of her!

Vivian was born January 29, 2022, and we were at Helen DeVos Children’s Hospital for two weeks right after she was born because she was having seizures. While there, we learned that she has a rare genetic disorder called KCNQ2 Developmental and Epileptic Encephalopathy, and the seizures are a manifestation of that. Her seizures have been under control because of meds since she was a week old, but there are many more characteristics from her disorder, such as developmental delays and autism. For more information on KCNQ2, please visit this website: https://www.kcnq2cure.org/

This site is helpful for us to share her progress, how we are doing, and to share photos of our little family. There are many updates, so it's been an easy way to stay connected with family and friends. Thanks for following along. It really boosts our spirits, and our community of all of you is important to us.

God is with us.

Newest Update

Friday, April 12, 2024

Journal entry by Kaitlyn Coeling —

April is Autism Awareness and Acceptance month.


These photos of Viv adoring her hands bring me much happiness! Enjoy! 

 

Here’s Viv’s haiku to her hands:

 

Hands I love you so

I could stare at you all day

Wowie wowie wow

 

Live like Viv

Read More of the journal titled "Friday, April 12, 2024"
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