Meet Zane! The boy who is our inspiration!

Zane came into this world on December 02, 2006 weighing 7lbs, 2ozs. He was so small, yet so beautiful! Our journey into an unknown world began a month after he was born when he started having seizures. At first it seemed like he had a funny little twitch but then we began to realize that it was more than that. He was a month and a half old when he had his first MRI and EEG done to figure out what the problem was.  The news on the MRI and EEG was not good. The doctor explained that he had a brain malformation known as Neuronal Migration Defect and this was the cause of his seizures. I will never forget that day and that's when my heart had sunk into the abyss somewhere. All the plans I had for him had some how disappeared within a matter of minutes. The boy who I thought would grow up, get married, have kids, was no longer a possibility. 


Like any parent I went home and researched Neuronal Migration Defect. I wanted to know everything I could about what was going on inside his little head. I found out at that point that Neuronal Migration Defect is a large term used for a group of syndromes and disorders. I now found myself on a quest to pinpoint which syndrome or disorder Zane fit into. My quest led me to a geneticist by the name of Dobyn's out of Chicago. I e-mailed Dobyn's and to be honest didn't really believe that I would get a response. Well he proved me wrong. He requested that I send him a story, MRI, and picture of Zane. That's what I did and 8 weeks later I got my diagnosis.


On Halloween 2007 we received Zane's diagnosis from the specialist. Zane was diagnosed with lissencephaly. Most people have no idea what this is but it is a rare brain malformation that affects the neuronal migration of the brain during fetal development. This rare disorder affects every aspect of his life but with the help and love of his family,  he is managing very well.  


 Zane is now 4 years old and doing very well. He continues to have seizures but they are controlled with medicine. He is g-tube fed and is on a strict diet known as the Keto diet. He receives visual and physical therapy from the blind foundation once a week due to having cortical vision impairment(brain doesn't register what the eyes see)and Optic Nerve Hypoplasia(underdevelopment of the optic nerve). He also receives occupational therapy for motor skills. He is severely developmentally delayed(doesn't roll, sit, or hold head up very well). Zane's hearing is also affected and he receives services through the Deaf and Blind School of Arizona.


Zane has two older brothers Logan and Caden ages 7 and 5 who keep him very busy. His brothers love him with all their heart and try to include him in whatever they are doing.


  For now Zane's outcome is unknown but we hope for the best each and everyday. I know this isn't the life we had envisioned for ourselves but we have grown to love everything and everyone that comes with it.