Aiden is the happiest, most loving 8 year old boy you’ll ever meet. He loves Indiana Jones and Cars and will recite his favorite lines to his heart’s content. He also has Dravet syndrome, a catastrophic form of epilepsy caused by a mutation in his sodium ion channel gene (SCN1A).
Aiden had his first seizure at 11 months and after an hour was placed in a medically induced coma to stop it. Sometime around the hour and forty minute mark in stopped with an elephant’s dose of medications.
As he grew, his seizures became more frequent and his development slowed. He continues to learn new things, but at a much slower pace than his peers. He walks, runs, jumps, and even waterskis with a determination unimaginable to the rest of us who support him in his endeavors.
2 years ago, Aiden started cannabis in the form of high CBD plant material and oil. Although it wasn’t the miracle he needed at the time to treat his clusters of 60-90 tonic clonic seizures in 48 hours, it did help with his myoclonic jerks and eye flutters. As science and treatment options progress in this area, we hope to gain a better understanding of how to use it best to help Aiden.
Every child with debilitating seizures should have access to this treatment, before having to fail 17 other medications and diets like Aiden did. Access and awareness is key to unlocking our children’s potential.