On September 21, 2011 my son Andrew was born 7 weeks early along with his brother Nicolas. He had little complications then and they both came home after 3 weeks. At 5 months old my little baby Andrew had his first seizure. When he was 10 months old he had went to the PICU (pediatric intensive care unit) for the first time. He had a 40+ min seizure that wouldn’t stop until the intervention of many drugs. He was intubated and in a small coma for 4 days. I wasn’t sure if he would wake up. This was when I knew his epilepsy was very serious. Until this point he had had only a handful of seizures and his epilepsy was being controlled by Keppra. The next year would be filled with emergency ambulances, ER, hospital stays, several EEG’S, MRI and CT scans. No one could tell me what he had, only that it wasn’t good. I had 4 neurologists come talk to me at one of our hospital stays, all at once and tell me it was untreatable, it wasn’t looking good and they were very sorry; Andrew was 17months old. Despite this prognosis of intractable epilepsy Andrew’s doctors tried multiple medications and combinations.
Andrew’s seizures were getting worse and becoming a 24 hour nightmare. My beautiful little boy was no longer laughing, smiling or speaking. He had no playtime, no joy and even his sleep was plagued by the monster that is epilepsy. I spent my days holding him in my arms as much as I could. Comforting him and holding him waiting for the next seizure and the next and the next. My Andrew, my baby boy was being taken from me every day that passed. 9 different medications couldn’t stop them. Neither did the ketogenic diet. Neurologists said brain surgery wouldn’t stop them and neither would a VNS transplant. I was losing my son, I was scared for him. I couldn’t imagine life without my little boy but I was given hope.
A documentary last year showed a little girl given a non-psychoactive cannabis oil to stop life threatening seizures. From then I spent my time trying to find a way to get it for my son.
I did, it is his miracle and it has saved him. Andrew now has most days seizure free because of cannabis. He can walk, run and play. He has fun and is very happy and we are happy that Andrew has gotten a second chance. Without cannabis this wouldn’t be possible, it has saved Andrew and given us the precious gift of time. Time to love, appreciate, hug and maybe within time maybe find out the cause of Andrew’s epilepsy. Right now we are thankful Andrew has access but we want this medicine to be available everywhere for other kids with serious illnesses. It’s time for change and I am here to fight for it and say this is MEDICINE and it has saved my son.