Emily's Journey
Emily was born June 6th 2009. Our first and only child. She was healthy and gorgeous. Around 6 months old she began doing this jerking that we thought was suspicious. She was immediately diagnosed with a catastrophic form of epilepsy called Infantile Spasms. Our world was turned upside down. The first medication made her regress to a newborn state within a week. Hands clinched and eyes closed was all that was left of our sweet girl. We tried medication after medication, 14 in all. We sought out a surgical opinion to remove parts of her brain. That is how serious this diagnosis is. She was not a surgical candidate. We had no answers, no reason for this horrible diagnosis, and a child who now has a feeding tube in her stomach. We tried a special diet to try and stop seizures also but it also did not work. I am sorry, she is a mystery, or there is nothing else to try were the words we heard from every doctor. We watched our daughter have up to 300-400 seizures a day at her worst. They were killing her.
I had to quit my job to stay home and take care of her while her father worked as much as he could to keep us afloat. Bankrupt, we lost our house and had very little hope.
Emily was 3 and was developmentally around a 4-6 month age level. She was happy and smiled all the time but was non verbal and couldn’t hold her head up, roll over, or sit up.
One evening I saw a friend post a video on facebook about these two children, Zaki and Charlotte, who were using cannabis to treat their severe epilepsy. I was in tears. Joe and I did research and quickly realized we had to try this for Emily. We had to give her a chance.
Within a month we had plans to move from Indiana to Colorado since IN is still an illegal state. No job, no house, and a lot of hope and prayers we moved. Thanks to Realm of Caring for helping to make this happen. Without them we would still be in IN.
Emily is now 4 and has been on CBD treatment since April. She is off all seizure medications! She is so much more alert and holding her head up and getting stronger everyday. We’re seeing things we were told we would never see! She is not seizure free yet but this is the best her seizure control has ever been. When we moved she was averaging 50-100 gagging, vomiting, and very scary seizures a day. She is now having about 15 weak and short seizures a day. I am amazed at what this plant has given us! Emily takes a little bit of oil a few times a day in a capsule. She isn’t high. In fact she has never been so alert and clear!
We are now getting to learn how to live life without seizures being the center of it.
