Tommy is a 22-year-old fun-loving young man. He is a happy guy and will give you a smile that melts your heart. He has suffered with severe seizures since he was 6-months-old, which, over the years, has caused developmental delay. Although, never officially diagnosed, clinically Tommy presents as having Dravet Syndrome. Unfortunately, this is a life threatening condition because his seizures can literally last for hours. Tommy has been on life support 39 times. He has tried 16 different pharmaceuticals, hundreds of medication combinations, which have horrific side effects, been on the ketogenic diet several times, has a Vagus Nerve Stimulator, sort of a pacemaker for his brain, and he even had brain surgery. Yet, his seizures remain uncontrolled. While this is catastrophic for him, it has a tremendous impact on the rest of the family as well.
For just a moment, try to imagine our life. Watching your child turn blue, stop breathing, have seizures that last for hours. Literally. Or, you are out shopping, and have to leave your other children at Walmart, with the manager until a family member can pick them up, because you have to follow the helicopter to the hospital. Imagine calling 911 so many times, that the 911 dispatcher recognizes your voice. Our life has been a recurring medical nightmare.
When Tommy turned 18, I went to court to gain legal guardianship of him so that I could continue to care for him. I stood before a Fairfax County Judge and pledged to care for my adult child to the best of my ability for the rest of his life. I am committed to doing that more than ever as I have found something that can really help him.
Currently, I am advocating for medical cannabis for people like Tommy. I worked with a group of parents to change the law in Virginia. While this is a huge step for Virginia, it’s just a baby step toward where we need to be.
Cannabis oils are proving to be very successful in treating people with intractable epilepsy, as well as many other illnesses. Tommy’s quality of life would greatly improve if his seizures were more controlled.
It’s time that the United States implement more options for people with seizures and other debilitating disorders. Cannabis needs to be rescheduled so that it can be researched, used in medical studies, and prescribed by doctors. I want to emphasize that I am in no way talking about recreational marijuana. The focus is on the medicinal constituents of a plant. We need legal access to a product that has consistency in production, comes from a reliable source, and is tested and regulated.
Tommy is one of the happiest people you will ever meet. He enjoys watching Sesame Street, playing with puzzles, and loves to ride in his van. My hope is to be able to gain legal access to cannabis and provide Tommy with the best quality of life possible.