October 9, 2005–December 28, 2018
United States

From Evie’s mom:

Evie was the fourth child we had and was very unexpected.  When she was born we had no idea what a journey we would have with her. During her 13 years we saw over 29 doctors who could not explain why she was the way she was. We had to put a feeding tube in at 18 months because she could not eat. We went to therapy because she could not walk or talk. During all the years, all the tests we did, blood tests, MRIs, CAT scans, genetic testing, and no one could give us an answer. 

Finally after she turned 8, we went to The University of Alabama at Birmingham to their undiagnosed disease dept and were given the diagnosis of a rare genetic disorder called KIF1a. We had no idea what it was or what to do. My eldest daughter got us in touch with this organization and we finally did not feel alone. Evie was the light of our lives and had such a strong life force, we thought she would live forever. When she went to school, teachers would love to watch her laugh. My mom said she saw angles and they made her laugh. She would laugh at anything: a tape gun, wheels squeaking on the floor, and even when we would argue. 

Evie was so beautiful she gave off a light that made everyone smile. When she left us, it was like out light was gone for good. At her memorial service, after the pastor spoke, a lone yellow butterfly flew around his legs and then flew away. Who sees a butterfly in January?? I felt like Evie was saying goodbye to us and wanted us to know she was on her way to heaven. 

The pain is so intense when you lose a child, even though we knew we may not have her for long, it was so unexpected and happened so quickly…  Our lives are different now, but I would not miss having my sweet girl in our lives for anything. She taught us how to love and never give up. I know she is in heaven dancing, singing, and running around being happy. We were blessed enough to be able to donate part of her to Dr. Chung’s research and I pray she will help provide information to help all of our babies. We will go on, and never forget our sweet angel, Evie.