Ethan’s Story
Ethan Weaver is a beautiful 6 YEAR old boy. He is loved dearly by his mother Cierra Weaver, father Michael Weaver, 2 older brothers ages 12 & 9, as well as the rest of his relatives and all who know him! He lives in Arizona, with the daily battle of a severe and rare form of Epilepsy, called Migrating Partial Seizures Of Infancy. This condition is considered terminal. For Ethan this condition is caused by a gene mutation of his KCNT1 gene, that happened spontaneously (or “randomly”, but not inherited.) when his DNA was very first forming. This was not something that was able to be detected on ultrasound or bloodwork while he was in his mother’s womb. Ethan was thought to be perfectly healthy during pregnancy and even after he was born. There were no complications with his birth, he was born a hefty 8lbs and checked out in tip top shape! He breast fed normally and was thriving. By 5 days of age his mother noticed he was having “subtle” seizures. But he would soon be having around 300 seizures a day that no anti-seizure medications could put a stop to. Ethan spent most of the first 5 months of his life living in Phoenix Children’s Hospital. When it was realized there probably wasn’t more they could try he was finally sent home for the 8th & last time, still having around 300 seizures a day, with the plan for his mother to sedate him up to 4 times each day to give him rest . His mother decided to start using medical cannabis oils for him and for the first time his seizures came down to around 10-20 a day a big improvement! Most babies with this severe diagnosis pass away before 1 year of age, and this was expected for Ethan also. He has shown his strength and that he’s a fighter and is continuing to make small improvements. "Like" this page and follow it to learn more about this amazing boy, see his photos and follow his journey
