You may have already come across Charlotte‘s story when mainstream media outlets wildly featured the news. It‘s the remarkable story of a small girl who successfully overcame her debilitating epileptic seizures thanks to a specially prepared CBD rich cannabis strain.
Back when the news broke, Charlotte Figi was 6 years old, and suffering from more than 300 grand mal seizures a week. At birth, she seemed a healthy baby; but just after 3 months, it all changed. She had her first epileptic seizure, one that lasted 30 minutes long.
Her parents rushed her to the hospital, but doctors were flummoxed. They ran every test they could, finding nothing abnormal or wrong with the child. As no underlying condition was found, not to mention a cure, they had no choice but to send Charlotte home. It wasn’t until a week later that another fit gripped Charlotte, one that lasted much longer. This became a common occurrence, with Charlotte having regular, prolonged and uncontrollable fits.
Doctors remained oblivious to the cause, no matter what they did, they could not find anything wrong with Charlotte. Every test came back normal – until one of the doctors finally came up with possible diagnosis - Dravet Syndrome, also known as myoclonic epilepsy of infancy (SMEI). Dravet Syndrome is a rare form of intractable epilepsy – meaning it cannot be controlled with drugs. It is usually something that develops before a child turns one year of age, and grows in severity during the second year, to produce muscle spasm and fits that last more than 30 minutes.
When this diagnosis was first made, Charlotte appeared to be otherwise healthy, and undergoing the same cognitive and physical development as her twin. But as the seizures began to get worse, and the cocktail of drugs doctors had prescribed became more and more ineffective, Charlotte’s cognitive functioning began to nose dive.
It was at the age of two and a half that Matt and Paige Figi decided to take their child to Children’s Hospital Colorado. There, Charlotte was tested for the gene mutation SCN1A, a mutation that is a common denominator of 80% of Dravet Syndrome cases. The results came back positive.
When the results came back, it caused a roller coaster of emotions. On one hand, it was devastating for Charlotte’s parents to know that their worst fear came true, but at the same time, the confirmation of diagnosis offered the relief of knowing what you are dealing with.
Charlotte’s father, Matt, a member of the United States Military, gave up his position to remain home with his daughter. With few treatment options available, both Matt and Paige started researching what could be done. The search became desperate, and at one point they were even considering trying an experimental drug from France that was used to treat seizures in dogs.
Paige took Charlotte to see a Dravet Syndrome specialist, who suggested a special diet, known as a ketogenic diet, which can help with the treatment of epilepsy. This diet is high in fat and low in carbohydrates. It forces the body to produce extra ketones, a chemical that suppresses seizures.
The diet appeared to work at first, halting the seizures. Unfortunately, it came with many unwanted side effects. Charlotte started suffering from bone loss, behavioural problems and a compromised immune system. Two years into the diet, the seizures started again.
It was soon after this, as the family had lost all hope for finding a treatment, that Matt found a video online of a boy in California whose Dravet Syndrome was being successfully treated with cannabis. The strain used to treat the boy was low in THC and high in CBD – two of the active components found within cannabis. THC is the main psychoactive component of cannabis, and whilst it offers a range of medical properties on its own, the cannabinoid is primarily associated with the high of cannabis. CBD on the other hand is not only highly medicinal, but also has no psychoactive properties what so ever.
Through research, Matt and Paige discovered that CBD had been found by scientist to reduce the chemical and electrical activity of the brain that causes seizures – all without any apparent side effects. In a sense, it was a revelation for Charlotte’s parents, who before discovering this, were strongly against the legalisation of cannabis.
It was around the time of this discovery that Charlotte had regressed so much that she was no longer able to function, losing her ability to eat, walk and talk. She was having 300 grand mal seizures a week - seizures that effect the entire brain, causing a loss of consciousness and muscle spasms.
This constant fitting was beginning to take a larger toll on Charlotte, and had resulted in her heart stopping numerous times. It was now at the point where doctors were suggesting putting her in a medically induced coma, to give her a rest. Matt and Paige had all but given up hope, and had even signed a do not resuscitate form, should her heart stop again. The doctors said they had run out of options, they could do no more.
With nowhere else to turn, Paige decided to try marijuana, respectively CBD. This however, is easier said than done. Paige needed the support of two doctors before Charlotte could be signed up for a medical marijuana program, plus the effects of marijuana on children are not well researched. Furthermore, there had been no prior case of a child using medical marijuana - Charlotte would be the state‘s youngest patient ever.
Early studies have suggested that smoking marijuana at an early age can interfere with brain development, and result in a lower IQ, being slower at tasks, having a higher risk of stroke and having increased incidence of psychotic disorders. Quite understandably, most doctors were hesitant to support the initiative, as it was unchartered territory - even in Charlotte’s case where there were no other options. Most research that claims the above is based on those who started smoking cannabis in their teens. Not much is known about how marijuana affects pre-teen children - but Charlotte would not be smoking it.
The first doctor to come on board was Dr. Margaret Gedde. When Gedde found out how many times Charlotte had been close to death, and the likely brain damage already caused by the intense amount of seizures she went through, she saw no other choice but to endorse the use of cannabis for Charlotte.
The second doctor to give green light was Dr. Alan Shackelford, a Harvard educated physician who already worked with medical marijuana patients. He was very hesitant at first due to Charlotte’s age and his lack of experience with her condition; but just like Dr. Gedde, as he learnt that all other possible options had been exhausted, and cannabis was all the hope Charlotte had left, he gave his support.
With approval now secured, Paige set out to find a dispensary that sold a cannabis strain containing a low THC and high CBD content. She eventually found one after a long time searching and bought up their stock of two ounces. She had this cannabis turned into a oil concentrate by a friend.
Starting out with a very small dose, they gave Charlotte the CBD rich medicine. Being uncharted territory, no-ne really knew what to expect. The previous video that Matt had found was anecdotal, with no obvious scientific backing. What happened was beyond their wildest dreams – the results were completely breath-taking. Charlotte went seizure free for an hour, then two hours, and then seven days. Her parents were astounded. It was a revelation. But they were quickly running out CBD oil to give her.
Paige contacted the Stanley brothers, one of the Colorado’s largest breeders of medical marijuana. At the time, it so happened that the brothers had created a strain with a high CBD content and low THC content, but were struggling to find a use for it.
Much like the doctors, the brothers were very hesitant at first with medicating a child; but after meeting Charlotte, they jumped on board.
The brothers agreed to supply Paige and Matt with the strain, now aptly named Charlotte’s Web. They have also set up a charitable foundation that supplies those suffering from serious ailments such as cancer, epilepsy and Parkinson’s disease. They make sure to supply the medical cannabis for very low prices, so it remains affordable for all in need. All they ask is that patients make whatever donation they can realistically afford. The charity also receives large donations to help the brothers keep supplying cannabis at a low cost from large sponsors who believe in their work. As a result, because of their efforts to help anyone who needs it, no matter if they can afford it or not, the Stanley brothers are known as the Robin Hoods of marijuana.
CBD has now been shown by a number of studies to regulate epileptic seizures without causing any side effects, and Charlotte’s case is the prime example. Charlotte gets a dose of CBD rich oil twice a day, with her food. Dr. Gedde has calculated she needs three to four milligrams of CBD per pound of body weight in order to keep the fits at bay. CBD has made it possible for Charlotte to get her life back on track.
Today, Charlotte lives a largely healthy and seizure-free life, only suffering from two to three seizures a month, usually during sleep. She can now feed herself, has started talking again, can walk, and even ride a bike. Her parents and Doctors are amazed at the rate at which she is recovering, with her parents saying they can see a significant improvement by the day – as her brain re-establishes connections that were lost during the intense period of fitting. She is now even painting, horse riding, skiing and dancing; she is able to make friends for the first time, she is happy and healthy. CBD has changed her life.
One of the biggest controversies about the story is a misconception. Many believe that Charlotte is getting high or stoned, but she is not. CBD is not psychoactive, so strains high in CBD and low in THC will not make the user feel high or stoned. It is also worth noting that neither CBD nor THC are addictive, either.
Charlotte’s story and recovery under the watchful hand of CBD caught the media’s attention and quickly became a national story. It became a shining example for everyone suffering, and shone light on the extraordinary benefits of medical marijuana. It allowed Dr. Gupta, a famous doctor and medical correspondent who was anti-marijuana, to see the benefits Charlotte was receiving; spurring his own investigations into cannabis, and ultimately changing his stance on it completely. He is now a huge advocate of the medicine, and has created documentaries that have informed millions on the real benefits of marijuana, and how previous propaganda has had the nation fooled.
A flood gate has been opened, parents in a similar situation are now flocking to the state in hopes of helping their child. The mounting pressure from parents, doctors and campaigners is forcing the federal government and politician rethink their position on cannabis. Recently, the US Food and Drug administration has green lighted the testing of a purified CBD extract, created by GW Pharmaceuticals, called Epidiolex. It is hoped that this drug will become a widely available treatment option for epilepsy.
The demand for Charlotte’s Web and similar CBD rich strains has grown so dramatically that the Stanley brothers cannot keep up, with over a third of their entire commercial crop already being CBD rich strains.
“We are not a bunch of stoners, and we do not associate with the stereotypes of what people would like to associate with us. We care about what we do" Joel, one of the brothers, has told news agencies.
The strain used by Charlotte has 0.5% THC and 17% CBD, making it non-psychoactive. The power that CBD has demonstrated, and the lack of negative effects is causing doctors to come forward in favour of CBD based treatments for children, which includes the University of Utah’s top paediatric neurologist.
The Stanley brothers have recently created another CBD rich strain recently, humorously named “The Hippie’s Disappointment” for its lack of psychoactive effects. “This is just the tip of the iceberg” comments Dr. Gedde. "People will continue to come because it works. Patients are seeing between 50 and 90 percent reduction in seizures with no side effects. That's amazing."
It is stories like this that open up the discussion about the healing properties of CBD, spurring research, educating people and finally triggering reform of drug laws. Charlotte’s story has become an inspiration to the cannabis community. It is thanks to the love and determination of Charlotte’s parents that change has been brought to the lives of many.