John’s battle with Epilepsy began at the age of three months, and it’s a good thing he was born a fierce fighter because Epilepsy is not for the faint of heart.
John has a family inherited SCN1a gene mutation and is diagnosed with Dravet Syndrome. As a child his mother was diagnosed with idiopathic Epilepsy, she suffered from febrile and illness induced seizures that resolved at age 8. John’s case is far more intense than anyone in his family. At the age of 4, John has suffered over 400 seizures.
Doctors can’t explain why John’s case is so complex, except to say, “we see this”. We get that non answer frequently, when we don’t understand why meds don’t help, or why seizures seem to get worse with meds, or why side effects from medications are stealing his life from him… “We see this, with Dravet” is all we are told.
9 combinations of various pharmaceutical medications have failed John, some of those medications aggravated the occurrence of seizures, others left him in a cognitive fog, or so over stimulated that he developed sensory processing behaviors to compensate. Everyday John fights to learn, to play, to participate and experience life’s basic joys. And he does it all with an infectious laugh and a smile that can warm the toughest heart.
Despite seizures John was on track educationally, learning letters and numbers and language at an impressive pace. At age two, he memorized letter puzzles and could identify letters and numbers out of order. At age 4 those skills have stalled and diminished. Medications have left him unable to focus on activities, hyper active and often disinterested. Activities he loves, like playing golf in the yard and putting puzzles together he is frequently unable to do, because the side effects of medication make it impossible for him to participate in life.
John’s zip code should not determine his ability to access medication. He should not be denied a medicine that could offer him the ability to carry on learning and living and experiencing life because of where he does, or does not, live. The benefits of cannabis should be available to everyone.
Until you’ve helplessly held your seizing child, seizure after seizure, you cannot appreciate the agony of Epilepsy. I wouldn’t wish that agony for anyone. Though I often wonder where politicians would stand on this if they experienced this fight first hand. If only politicians and legislatures and lawmakers could quiet their agendas just long enough to hear the cry of the community of people who need their compassion and willingness to be educated about the therapeutic benefits of cannabis, because the science and proof exists, for those who are open to hearing about it.