Dravet Syndrome Stories From Those Who Know

Charlotte's Story

by Paige Figi

Charlotte Figi

My name is Paige Figi. My six year old daughter, Charlotte, is diagnosed with Dravet Syndrome; a catastrophic pediatric epilepsy. She has significant cognitive and motor delays, brain damage, a surgically placed feeding tube for water and food, struggles to talk and walk, and needs full care in all areas of life. "Charlie", as we call her, suffered from over 300 tonic clonic seizures per week, often over 60 per day. After failing most anti-epileptic pharmaceuticals, we were told she had "reached the end of the road", that there was little left to try, and the neurologists removed her last remaining, failed, drug. I heard of a California parent successfully treating their epileptic child with cannabis. We live in Colorado, a medical marijuana legal state, and I got busy doing my research. I spoke with parents, doctors, activists, scientists, chemists, growers, patients, lawyers, and dispensary owners. I learned that there was a way to medicate without any psychoactive side effects; the 'high' as it is called. I listened to their stories and my opinion quickly changed from judgment of marijuana as an illegal, recreational drug to understanding of cannabis as a viable medical therapy. Perhaps it could help my daughter? I found the Stanleys, people dedicated to growing high CBD strains of cannabis. The CBD, or cannabidiol, is a property of the plant helpful with seizure control. The THC in the plant, while having its own medical properties, is also known to give the psychoactive effect, the 'high'. Hearing of another success story with Dravet Syndrome and CBD, I searched out sources of high CBD:THC ratio plants, and found some as high as 30:1. After getting the green light from our team of neurologists and pediatricians, we started Charlotte at low, non-psychoactive doses and charted her progress. The first week she went seven days seizure-free, down from the 300 grand mals she had the previous week. Three months into our journey and she was at a solid 90% seizure reduction and free of all pharmaceuticals. Eight months into our journey put her at 99+% seizure reduction. Along with the seizure control, there are many other benefits she is experiencing from the medical cannabis. Despite being previously 100% tube-fed, she is consistently eating and drinking on her own for the first time in years. She sleeps soundly through the night. Her severe autism-like behaviors of self-injury, stimming, crying, violence, no eye contact, zero sleep, lack of social contact...are a thing of the past. She is clear-headed, focused, has no attention deficit. Charlotte rides horses, skis, paints, dances, hikes. She even has friends for the first time. Her brain is healing. She is healthy. She is happy.

Charlotte Figi's Seizure Video

The following video is of Charlotte Figi having a seizure prior to starting medical marijuana treatment. Warning: This videos contains footage of seizures that can be quite upsetting to view.

Submitted 21 July 2014 (by Matt Figi - Charlotte's Father).

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