Our oldest prince, Glenn (we nicknamed him Bug), was born healthy, happy and small. We would find out later that his size, while apparently within normal range, was an indicator of his diagnosis of FRa (Folate Reductase Autoantibody). He was a hungry boy and a bad sleeper, but he was ours and he was perfect.
Bug grew well, hitting all of his developmental milestones early, displaying no signs of the monster crouching inside, no indicator that by the age of 4 he would regress so much he could not be allowed to walk without guidance. No sign that he would never speak, or that he would never throw a ball again.
His first hint of anything not typical was a seizure at the age of 2 years and 11 months: a massive Tonic/Clonic out of the blue. On October 25th, 2005 Bug had his first and second seizure. It was terrifying. It was heartbreaking and it was the start of a new normal.
Since that time, we have seen over 10,000 seizures. We see them weekly, daily and sometimes hourly but it is getting better. Once he started supplementing with an analog folate, he seizures decreased, his sleeping improved and his happiness increased. We were able to get him down from 5 anti-seizure medications to one and the supplement. But, he still was having 1-8 seizures a day. And we call that an improvement.
Glenn deserved a chance to get all the way back to that happy, outgoing, amazing big brother he once was. We still think he is in there, somewhere, standing behind a glass wall screaming at the top of his lungs for us to help him. And help him we are. His Cannabis treatment is going well. His seizures are down by 50% and he smiles when we call him name. He holds his sister’s hand again and he kisses when he is happy. It’s the tip of the iceberg, it’s a new hope, and it’s what the face of cannabis looks like: a little boy with a brighter future.