A young girl, battling for her life, suffered from almost 300 grand mal seizures a week. Charlotte was only two years old when she was diagnosed with Dravet Syndrome; a form of myoclonic epilepsy which is intractable with current pharmaceuticals. The condition worsened to the point where Charlotte was unable to normally eat, walk or even talk. Her parents, Paige and Matt Figi, found out that there was only one last uncharted, potential solution, and they had to try it. They discovered the miracle of CBD oil.
Charlotte and her twin were both born healthy, but at three months old, she began having seizures. The first hospital visit consisted of the doctors telling Paige to take her daughter home and that the seizures would cease. However, the seizure activity did not end, it only became worse. After numerous tests including an MRI, EEG and spinal tap, the doctors sent them home with no diagnoses.
After a neurologist from Children’s Hospital Colorado was finally able to diagnose her with the very rare condition; Dravet Syndrome, Charlotte saw a specialist in this disease and he suggested a ketogenic diet; low in carbohydrates and high in fat. The body produces a natural anti-seizure chemical known as ketones when there are not enough carbohydrates in the diet, so they wanted her to consume less so her body would create more anti-seizure chemicals. However, this diet weakened her immune system and made her bones softer. Two years later, the seizures resumed.
An Unconventional Remedy
Charlotte’s parents had taken her to the hospital and tried every known possible regimen for their daughter, but her ailment continued to worsen. She was taking seven different medications but she became debilitated socially, physically and cognitively. The doctors had even suggested putting her in an induced coma because she was having so many seizures. Her heart would stop and she would become unconscious. They were at the end of all hope until Paige had heard about one last option; CBD oil.
Her mother, Paige, pursued this potential remedy but needed to receive permission from two doctors and find a strain that would work for her daughter. It took multiple attempts to find doctors willing to sign off on the idea of such a young person using a substance that had so little research behind it, particularly a Schedule 1 according to the government.
After seeking and being denied countless times, Paige was able to find the two doctors; Dr. Margaret Gedde and Alan Shackelford to sign permission for the medical cannabis treatment. Dr. Gedde had decided Charlotte was likely to have brain damage, and that there were no other solutions. Alan Shackelford had patients he was treating with medical cannabis and although Charlotte was by far younger, he decided this might be the only possibility left for her.
The Search for the Perfect Strain
Next, Paige found a strain, named R4, at a dispensary in Denver with a high CBD and low THC content so Charlotte wouldn’t experience a “high”. She bought all that was available and had a friend create a concentrate from it.
At five years of age, Charlotte had her first dose of CBD oil and it was an overwhelming success for the family. They didn’t have any idea of what to expect, as there was almost no research to base expectations from. They very quickly noticed a significant difference when only a couple hours went by with no seizure activity. Then a day went by, and still no seizures. Charlotte was seizure free for an entire seven days. This was unlike any other treatment they had tried, it was phenomenal. Now that they had found a successful treatment for their daughter’s condition, they had to find a reliable source with enough product to sustain this treatment.
At the time, the Stanley brothers were a large producer of medical cannabis in Colorado and had been producing a strain by crossing industrial hemp with cannabis. The result was a perfect strain for Charlotte with high CBD content and low THC. This strain was comically named “Hippie’s Disappointment” which no one would purchase because of the lack of THC and psychoactive effects. It turned out to be the perfect ratio for Charlotte. Paige had contacted them, discussing her daughter’s condition. Before the Stanley brothers had met Charlotte, they were hesitant in giving such a young child cannabis, but after they met her, they decided to take the leap.
This strain which has only 0.03% THC and 17% CBD was given to Charlotte in oil form twice a day with food. She was dosed 3-4 milligrams per pound of body weight to keep the seizures away. Doctors and her parents could not believe the rate in which she recovered, physically and cognitively. Her parents quickly began to meet their daughter, without seizures. She started smiling, something Paige and Matt hardly saw because she was seizing and crying. She started walking, eating and playing with other kids.
After the success in this little girl’s life, the Stanley brothers decided to create a non-profit organization to help people, like Charlotte, to be able to afford this miracle treatment. Today the Realm of Caring Foundation participates in collecting and funding data, educating people and advocating for families.
The Stanley brothers continued growing more of a strain now called, Charlotte’s Web, after Charlotte Figi. This strain has low enough THC levels to be grown as hemp, which also allows it to be transported legally in the eyes of the Federal government to some states. Families were moving to Colorado to gain legal access to this medicine that was illegal in other states. Since Charlotte’s success, her story has been shared with the world and is used as a reference for many other children’s cases with similar ailments.
Today, Charlotte is ten years old and thriving as she has only a few seizures a month, usually in her sleep. Thanks to CBD oil, Charlotte and hundreds of other children are able to live a functioning, happy life.