This is the story of a little girl named Charlotte Figi. Charlotte is the daughter of Matt and Paige Figi. Charlotte, a six year old, should be running and playing with her friends. But until recently, Charlotte could not. See, Charlotte suffers from a rare form of epilepsy known as Dravet Syndrome. This “syndrome” causes Charlotte to be wracked with as many as 300 seizures a month. (Averaging 10 a day) She was not able to walk or even feed herself. NOTHING seemed to help. Until the Figis tried Cannabis Oil…
Matt Figi had heard from doing research on Dravet, that another young child (approximately Charlotte’s age) had been helped by use of Medical Marijuana. So, desperate, they decided to give it a shot. Charlotte’s mother, Paige, recalled, “When she didn’t have those three, four seizures that first hour, that was the first sign, and I thought, ‘Well, let’s go another hour, this has got to be a fluke.’ The seizures stopped for another hour. And for the following seven days.”
The True Story of Charlotte’s Web
The strain used to treat Charlotte has been dubbed “Charlotte’s Web.” It is low in THC and high in CBD. (THC gets you high, CBD heals. As I have noted in previous blogs.) After a long and exhausting battle, Pediatricians and other Health Professionals have approved the treatment and it has been declared “nothing short of amazing.”
Her recovery has been termed “speedy.” In a relatively short time, she has caught up with her peers. She can feed herself, walk, ride a bike, all without any assistance. According to Matt and Paige, she is talking more and more each day. Thanks to Medical Marijuana, Charlotte is able to live a more fulfilling and less painful life. The same as any other six year old little girl.
And that’s the short story…
I had originally heard from a reliable source that “Charlotte’s Web” was a strain developed out of the research being done on secret farms in Israel. Although the research there is ground breaking and, indeed, remarkable; it is not the research that led to Charlotte Figi’s amazing recovery.
Matt and Paige had met while students at Colorado State University. Matt, eventually, joined the military. They bought a house, traveled the world and had a son, Max. Totally normal stuff. Two years later, the couple planned to have another child. Imagine their surprise and delight when the ultrasound picked up, not one but two babies!
Charlotte and Chase were born at 40 weeks on October 18, 2006. Both babies were in the seven pound range. All seemed perfectly normal. But at 3 months old, the Figis world changed…
Matt was diapering Charlotte after a bath and her eyes started flickering. This went on for 30 minutes. They rushed her to the hospital and was told it was a random seizure. The hospital did the full panel, MRI, EEG, Blood work, Spinal Tap, nothing was found. The Figis were sent home. But a week later, it happened again. This time, longer and stronger. And it was only the beginning…
The next few months, Charlotte had frequent seizures lasting two to four hours. She was hospitalized repeatedly. The doctors were puzzled. All tests came back normal. The doctors said things like, “Wow, it’s unusual to see seizures this bad but we believe she’ll grow out of them.” That is when the Dravet’s was found. Dravet Syndrome is also known as myoclonic epilepsy of infancy or SMEI. Dravet’s is a severe form of intractable epilepsy. Intractable means the seizures cannot be controlled by medication. First seizures with Dravet’s usually start before age 1. The second year, myoclonus, or involuntary muscle spasms and status epilepticus occur. These are cluster seizures lasting more than 30 minutes.
At this time, Charlotte was developing normally. She and Chase walked and talked on the same day. But the seizures became worse. And traditional medications were not working. She was on seven of them. They were heavy duty addictive ones–Benzodiazepines and Barbiturates. Some would work for awhile but the seizures would come back with a vengeance.
At 2 1/2, Charlotte was tested for the SCN1A gene at Children’s Hospital Colorado. SCN1A is present in 80% of Dravet’s sufferers. Charlotte’s came back positive.
Mom Paige reports, “It was a relief. Even though it was the worst case scenario, at least we knew.” Matt left the military. Every mission, every training, he was called home because Charlotte was in the hospital or ICU. They considered going to France for experimental treatments. One doctor recommended a drug that was currently being used on dogs.
Paige took Charlotte to a specialist in Chicago who put the little girl on a Ketogenic Diet. Frequently used on epilepsy, it is high in fat and low in carbohydrates. This forces the body to make extra ketones, natural chemicals that suppress seizures. The diet helped but not without side effects. She suffered from bone loss and her immune system plummeted. Behavioural symtoms started. She was found eating pinecones. The two years into the diet, the seizures returned.
Then in November 2000, Voters in Colorado approved Amendment 20. This Amendment opened a Medical Marijuana registry program. Eight medical conditions are included in the guidelines. Glaucoma, cancer, HIV/AIDS, Muscle Spasms, Seizures, Severe Pain, Severe Nausea, and Cachexia (a severe weight loss with muscle atrophy). For the record, Paige had always voted against Medical Marijuana but when Dravet’s entered the picture, their personal picture, her views radically changed.
Matt spent all of his spare time scouring the internet, searching for something that would help his little girl.
Online, he found a video of a CA boy who’s Dravet’s was being controlled by the use of Cannabis. As I stated earlier, this strain is high in Cannabidiol (CBD) but low in THC (tetrahydrocannabinol). THC is psychoactive and CBD has no psychoactive properties at all. Scientists believe that CBD quiets the excessive electrical and chemical activity in the brain that causes seizures. It worked for the CA boy, why not Charlotte? (By this time, she had lost the ability to walk and speak.)
Earlier in this blog, I reported Charlotte was having 300 seizures a month. Researching further, I have found that she was having 300 a WEEK. Her heart stopped many times. At home, when it happened, Paige would perform CPR until help came. If it happened in the hospital, where the parents had signed a DNR (Do Not Resuscitate Order), the family said it’s goodbyes. At age 5, the Figis were told there was nothing left to do.
That’s when Paige decided to try Medical Marijuana. Colorado requires two doctors to sign off on a request. This was no easy feat, Charlotte was the youngest patient to ever apply. At this time, there are no studies on long term use of Medical Marijuana starting in early childhood.
Finally, Dr. Margaret Gedde was called in. Since Charlotte had been so close to death so often, severe brain damage from seizure activity, and other problems from the pharmaceutical medications; the decision was relatively easy.
Dr. Alan Shackelford was the second doctor brought onboard. Dr. Shackelford is a Harvard physician with many Medical Marijuana patients in his care. He was not familiar with Dravet’s and had reservations with Charlotte being so young. But all other avenues had been exhausted. Cannabis was the only one not used yet.
Paige found a small amount of the R4 strain in a Denver dispensary. She bought all they had–2 ounces and paid $800. A friend extracted the oil.
Paige had it tested before administering it to her daughter. Paige was terrified. “We were guinea pigging our daughter. This is a federally illegal substance.”
As I blogged earlier, the results were amazing. But their supply was running out.
It was then that Paige met the Stanley Brothers (these 6 brothers are BIG in growing and dispensing in Colorado, possibly the largest in the state). They were in the process of crossbreeding a strain that was low in THC but high in CBD. It had no market. Even they had concerns about Charlotte’s young age. But once they met her, heard her story, they were on board.
The brothers started the Realm of Caring Foundation, a nonprofit that supplies Cannabis to adults and children suffering from several diseases (epilepsy, cancer, multiple sclerosis, and Parkinson’s) who cannot afford it.
The Stanleys have been called the Robin Hoods of Marijuana. Josh Stanley says it’s their calling. They use the money from their dispensaries, donated funds (sponsors who believe in their cause), and patients such as the Figis give what they can. The state will not allow them to actually give it away free, so they ask for, basically, pennies.
Charlotte takes 2 doses a day in her food. Dr. Gedde determined the dose to be 3-4mg of oil per pound of Charlotte’s body weight.
Today, Charlotte is 6 years old and thriving. Her seizures are down to twice a month and those occur in her sleep. Matt questions why. Why were they the ones to find the cure? A natural cure. Why didn’t the doctors know about this? And if they did, why didn’t they tell anybody?
And that is the story, the true story, of Charlotte’s Web…