When Charlotte and Chase Figi were born as twins on October 8, 2006, it brought sunshine to Matt and Paige, the child’s parents. But the happiness of the Figi’s dimmed as soon as it appeared and quickly turned into shadows. Barely three months after the birth of the twins, Charlotte had a sudden seizure that lasted for 30 minutes. They saw her eyes flickered as her whole body violently trembled.
Terrified and shocked, her parents rushed their infant daughter to the hospital. After Charlotte underwent the whole nine yards of different diagnostic tests, doctors found no peculiarities. They said that the seizure would probably just go away and Charlotte would eventually outgrow it.
But it did not. Charlotte’s seizures became more frequent and her hospitalization got longer. As the seizures turn from bad to worse, doctors prescribed Charlotte to take seven heavy-duty addictive drugs containing barbiturates and benzodiazepines. Although the drugs seemed to work for a while, Charlotte’s seizures always returned with a vengeance.
By the time Charlotte was two-years old, her parents watched her deteriorate for the worse. Paige observed that their daughter was declining cognitively. Charlotte was slipping away.
Then, the world of the Figis continued to break apart when Charlotte was diagnosed with the Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI. A neurologist in Children’s Hospital Colorado tested Charlotte positive for SCN1A gene mutation, a common occurrence in 80% of Dravet Syndrome cases.
What is Dravet Syndrome? It is a rare and severe form of intransigent epilepsy. No kind and amount of medication can control the seizures. In the early stages, usually in the second year, the patient suffer involuntary spasms, status epilepticus and seizures in clusters.
But there was a silver lining around the Figis emotional devastation. The invisible monster that has been destroying their daughter from within had shown its ugly head. Now Matt and Paige Figi knows what they are fighting against.
In an interview, Paige said, "I remember to this day it was a relief. Even though it was the worst-case scenario, I felt relief just to know."
Matt decided to leave the Green Beret. It was almost impossible to be continue his military career since he was always called home whenever Charlotte had a seizure. The ICU had become her daughter’s second home. He had to fight a battle with her daughter in a different front.
Matt and Paige did what any dedicated and loving parents would do: they exhausted nearly all means and options to find medical relief for Charlotte. A doctor in France even suggested to try an experimental anti-seizure drug that was being tested on dogs.
A Dravet specialist suggested to put Charlotte on a ketogenic diet. This high-fat low carbohydrates diet is commonly used to treat epileptic patients. The ketogenic diet induces the body to produce added ketones and other natural chemicals that help repress the seizures.
Although the ketogenic diet controlled Charlotte’s seizures, the side effects made her immune system plummet and it affected her behavior. At the end, the Figis found themselves back on square one, at a lost on how to alleviate Charlotte’s seizure attacks.
Matt started to research about Dravet Syndrome and found an online video about a boy from California who was successfully treated with cannabis. In his research, Matt learned that the cannabis strain used to treat the boy was low in tetrahydrocannabinol (THC) the compound that makes marijuana psychoactive. Most of all, the strain was also high in cannabidiol (CBD), the medicinal element contained in marijuana.
There are medical researchers and scientist who think that CBD can control the enormous electrical and chemical assertions in the brain that results into seizures. According to Matt’s research, medical marijuana treatment dramatically reduced the seizure attacks of the California boy.
While Matt busied himself with research, Charlotte’s condition worsened. She had lost the appetite to eat. Charlotte could barely walk and talk. There were even frightening occasions when her heart stopped. Had not for Paige’s cardiopulmonary resuscitation, her daughter would have died.
As Charlotte’s world shrink smaller, there were doctors who suggested putting their daughter in an induced coma. The dead end loomed from a distance, for there were no more conventional medical treatment that can save Charlotte from her condition.
The only path left for the Figis was a road less travelled, a detour to uncertainty and risks: medical marijuana. Finding two doctors to sign a medical marijuana card for Charlotte was the first obstacle that Matt and Paige faced.
Despite of the promising medical results it brought to other patients, medical marijuana placed children at risk. It can affect the child’s pulmonary and cardiac functions. Medical studies claimed that marijuana can cause the slow development of children’s brain and thereby lower the IQ.
The big question was: medical marijuana might be good for adults, but is it safe for children?
Initially, doctors refused to sign Charlotte’s medical marijuana card. Being the youngest applicant for medical marijuana treatment at that time, most doctors deemed cannabis unsafe for Charlotte. All seemed lost until two doctors, Margaret Gedde, MD and Alan Shackelford, MD agreed to prescribe medical marijuana to Charlotte.
The couple purchased a marijuana strain with low THC and high in CBD called R4. The Figi couple paid $800 for two ounces. They had the oil extracted, tested and was given to Charlotte in small doses.
The dark clouds over the plight of the Figis parted and a ray of hope shone through. Charlotte’s condition started to dramatically improve as her seizure attacks became less frequent. This major medical breakthrough motivated Matt and Paige to continue their daughter’s marijuana treatment.
One of the largest marijuana growers and dispensers in their state were owned by the Stanley’s. It was run and managed by six brothers who crossbreed marijuana to produce a strain with high CBD and low in THC. Although hesitant at first, the Stanley brothers agreed to help Charlotte and supply the medical cannabis.
Going an extra mile, the Stanley brothers established the Realm of Caring Foundation, a nonprofit organization that supplies medical marijuana to people suffering from different diseases like Parkinson’s, epilepsy, cancer and multiple sclerosis. Like modern-day Robin Hoods, these brothers provide marijuana especially to sick people who cannot afford them.
Charlotte may be a sick and frail young girl but she is on the threshold of making medical history. The marijuana strain that was crossbred by the Stanley Brothers is now known as Charlotte’s Web. The University of Colorado Anschutz Medical Campus will study the effects of Charlotte’s Web to patients with the Dravet Syndrome. They hope to determine the specific genetic components that makes Charlotte’s Web effective or non-effective in patients.
Anecdotal evidence based on the Charlotte’s case suggest that Charlotte’s Web can be effective in treating children with similar medical conditions.
Edward Maa, the principal investigator of the Charlotte’s Web study, said that the new trial could be a first step toward building a body of research on how and why medical marijuana can be used to treat epilepsy.
The research team is recruiting epilepsy patients who had already been treated with Charlotte’s Web. The recruits will be divided into two groups. The first group are composed patients whose seizures have been reduced by at least 50%. The second group are the patients who have little or no results after taking the cannabis oil.
What kind of genes respond and not respond to Charlotte’s Web? This is one of the most important questions that researchers will attempt to answer. Definitely, the long hours of study, the voluminous amounts of data collected and observations done by researchers on patients will all add up and build a scientific knowledge bank for medical cannabis.
There are now legal discussions and debate about the legalization, morality, use and distribution of Charlotte’s Web in the United States. Behind the noise of opposing views on the matter, Charlotte lives on the center of her web with less seizures, a happy and hopeful girl who is finally having a glimpse of what it means to be a normal healthy child.