Project Description

McKenzie’s Story

McKenzie was diagnosed with Dravet syndrome at 6 months old! She was in and out of the hospital for a year and a half. A year ago we finally got her on some medications that have worked for her. She is currently on Clobazam and ethosuximide and has phenobarbital for her rescue medication. She is currently 2 and a half years old, and she has been a year seizure free. She struggles with alot of developmental delays, along with her not being able walk well. Talking and understanding things is a challenge, along with a sleep disorder which can be a struggle nightly. She currently is averaging a 12/15 month old in her cognitive abilities. The older she gets the more we are noticing we need to watch her body temperatures closely. She can get really warm or really cold. She seems to not be able to control her body temperature very well. But, she is a determined little girl and has grown so much in the past year! She has so much love in her heart. It is a true joy to watch. We do not know what she will grow up to become, but we continue to try helping her devolpment with many different therapies. We are currently looking into schools for her in the fall and look forward for her to experience that. Our children are so special in there own way and we feel privileged to have her in our lives!