By Heather Ritchie
Ray Mirzabegian was running out of time for his daughter Emily who suffered from a rare and severe form of Epilepsy called Dravet Syndrome. Emily began having seizures when she was five months old. She suffered over 100 seizures each day. Ray said that they tried every solution available such as epilepsy medication, surgery, and they even took her out of the country for stem cell treatments. Still, nothing helped.
Their family had no life. All Ray thought about was losing his child as he watched her seizing on the floor, her mouth bleeding as she bit her tongue. Death was a constant unwanted family companion. A leading neurologist told Ray to go home and prepare himself and his wife for losing Emily. He was advised to look into hospice care.
The Battle Begins
Dravet Syndrome is a devastating genetic lifelong disease that involves prolonged, frequent seizures. Formerly known as Severe Myoclonic Epilepsy of Infancy (SMEI), its onset begins in the first twelve months of a child’s life. The disease is concomitant with other issues like abnormal EEGs and developmental delays. Symptoms include problems with growth, nutrition, speech, the autonomous nervous system, as well as horrendous long-lasting seizures, chronic infections, sleeping problems, and more. The prolonged, repeated seizures cause a 15 to 20 percent mortality rate in children who suffer from this terrible condition.
Mirzabegian said that around the end of 2012 he saw a documentary on a little boy in Northern California that had a similar disease and was being treated with cannabis. It sparked a tiny ray of hope for him and his family, and so began their investigation.
Medical cannabis consumption back then meant going to primarily unregulated and unlicensed dispensaries and seeking help from a budtender with little medical knowledge to help guide their recommendations. Their hope began to dwindle as they realized that there just wasn’t any good, consistent product available. Then, a CNN documentary about a little girl named Charlotte emerged.
A Little Girl Named Charlotte
Matt and Paige Figi had their life all planned out. They were expanding their family, adding twins Chase and Charlotte who were born on October 18, 2006. When the twins were three months old, Charlotte (nicknamed Charlie) had her first prolonged seizure after a bath. The Figi family would never be the same again.
As the severity of her seizures progressed, doctors ran a multitude of tests attempting to put a name to the condition that Charlotte suffered from. But they were perplexed; all of her tests came back normal. They hoped that she would grow out of it, but she didn’t. Her seizures persisted, and the seven prescription drugs she was taking—including addictive benzodiazepines and barbiturates—did not stop the diseases’ progression, or alleviate her symptoms.
When Charlie began to decline cognitively at two and a half years old, she went and saw a neurologist at the Children’s Hospital in Colorado. By then she had begun developing autistic behavior, including severe aggressive outbursts. The neurologist tested Charlotte for gene mutations involving the voltage-gated sodium channels that cause epilepsy in humans. Most of these inherited mutations occur in the SCN1A gene. Positive results from the test confirmed she had the dreaded Dravet Syndrome.
By age three, Charlie barely ate. She no longer talked, and had to be moved in a wheelchair. The Figis didn’t know what to do. At five years old, Charlotte was having 300 seizures each week. When her heart stopped multiple times, her parents put her in a medical coma to give her body a chance to heal.
They Tried Every Solution to No Avail
Matt Figi had to leave his military career because he kept getting called home when he was on missions for his daughter’s hospitalization. Some doctors advocated an experimental anti-seizure medicine that was being tested on dogs. Others even deliberated treating Charlie with a medication from France.
One doctor who specialized in patients with Dravet Syndrome placed her on a ketogenic diet low in carbohydrates and high in fat. There was some improvement resulting from the new diet, but it lead to other problems with her immune system and bone density. Her father said she started to do odd things, like eating pine cones. Eventually the seizures could simply no longer be controlled.
Medical Cannabis
However, hope once again prevailed when Colorado instituted their medical cannabis program. The state listed a limited number of diseases that patients could treat with cannabis and it allowed Charlotte to be treated for her seizures. Ironically, Paige always voted against legalizing cannabis use, but that was before she witnessed her daughter suffer and teeter on the brink of death.
Charlotte was the youngest patient in Colorado to ever apply for a medical cannabis license, and it was difficult to find doctors willing to approve her for one. There is little information on the long-term effects of using cannabis on children. Some early research indicates that children who smoke cannabis from an early age have lower IQs later in life and have an increased risk of suffering from psychiatric disorders. However, there simply weren’t (and aren’t) enough studies with reliable results to know for sure. Charlie already had brain damage from the daily seizures and numerous medicines that she, so the worries about possibly suffering more brain damage didn’t affect the Figi’s decision since the alternative was much worse.
Eventually, the Figis found a chemovar called R4 that was low in THC and high in CBD. Scientists discovered that it calms excessive chemical and electrical activity within the brain connected to seizures. The Figi’s had a friend extract the CBD oil and had it tested at a laboratory for safety precautions before they began Charlotte on a small dose. The results were immediate, as one, then two, and then three hours ticked by with no seizures. After being let down by treatments so many times, they were amazed at its long-lasting results. On her first try, Charlie went seven full days with no seizures. The only problem was that there wasn’t enough cannabis oil available!
The Stanley Brothers and Charlotte’s Web
It was Paige that found the Stanley Brothers. They had crossbred a chemovar high in CBD and low in THC that no one else seemed to want since it lacked the high THC content. When Paige approached them, they too worried about Charlie’s young age, but agreed to let her use their unique product. This compassionate partnership sealed their brand as a powerful medicinal chemovar that ended up helping hundreds of patients. It was named after the little girl who now thrives and is talking and learning more and more each day. Now, Charlie only has seizures a couple of times a month, and she can do the things that other kids take for granted, like feeding herself.
The Stanley brothers wanted to make the best cost-efficient medicine possible. They oversee every step of the cultivation and production process. The CBD oil is extracted by a scientist who previously worked for Pfizer. Its mixed with olive oil making it easier to ingest and its tested for its purity by a third-party laboratory. Today the Figi’s travel around America, advocating for high CBD level chemovars for medical patients.
Ray and His Family Finally Had Hope, Too
After watching the triumphant documentary, Ray’s family was hopeful. This prompted Ray to look more closely at CBD, and he traveled to Colorado eight times where he met the Stanley Brothers. But their struggles were far from over, even if they had finally found a solution for Emily.
There was one giant obstacle to overcome from the beginning. Transporting cannabis over state lines was illegal. He and his wife were stuck with a difficult decision. Should they uproot their whole family and move to Colorado? Mirzabegian couldn’t be sure he or his wife would be able to find jobs as good as the ones that they both had, and they needed to be able to support their family. He was a College professor and had dedicated much of his life to his career. Should they split the family up as others had, with one staying behind to earn money while the rest moved? Plus, they had a large support group made up of family members in California. People like the Mirzabegians’ have become labeled as “cannabis refugees.”
So, Ray pitched an idea that he could help the Stanley Brothers branch out to California and help clients there who may need access to Charlotte’s Web. In 2013, he helped form a waiting list which included over 14,700 people. By 2014, with the help of Ray, the Stanley Brothers started providing Charlotte’s Web to members on the waiting list. The waiting list was eliminated altogether shortly after. Today, Ray is still a premium distributor of Charlotte’s Web products in California.
The Realm of Caring Foundation
By December 2014, the Stanley Brothers were able to start helping some of those on the waiting list with the help of a non-profit organization that Heather Barnes Jackson started. The Realm of Caring Foundation has grown in size, supported by families who came together to help one another. Much of it was born out of the necessity to find consistent quality cannabis medication for their children.
The Foundation helps provide funding and medicinal cannabis to treat people with cancer, epilepsy, Parkinson’s Disease, and MS who can’t afford treatment. The Foundation offers grants to families to relocate to legal states and offers research opportunities for the universities that it partners with.
They also help businesses, physicians, researchers, and hospitals navigate tricky cannabis laws and keep up the pace of innovations in cannabis science. Realm of Care offers classes to healthcare professionals and the public while working hard to improve legislation. They’ve partnered with universities like Johns Hopkins to create various projects like the Adult Epilepsy Study and the Observational Research Registry.
Emily’s Progress is the Inspiration Behind Canniatric
Emily Mirzabegian discontinued all her prescription medications and went from having many seizures a day to just one or two a week. Most importantly, her quality of life has improved, not just because the seizures have stopped, but also because she no longer takes addictive opiates and sedatives. Today, she plays like other kids, and for this, Ray and his wife are eternally grateful. It was a truly amazing result. Her success was so overwhelming that it sparked Mirazabegian to make a career change.
Ray launched his own organization called Canniatric. Canniatric is a consulting firm for the pediatric cannabis community. They provide free consultations in-person or by phone to families looking at treating their kids with cannabis. This non-profit helps educate, guide, and align families with doctors that are supportive of medical cannabis. They also provide legal access or help find attorneys who are supportive of cannabis as a medical solution. Monthly seminars are offered to gather people to talk about the subject and educate them.
Ray believes that education is critical because there are still patients going into dispensaries and asking for recommendations on what to give their child that has autism or seizures. If the patient consumes the wrong product, it can make things much worse for them. . They may start harming other family members.
Educating cannabis professionals is also important so that dispensaries know which products to recommend. Cannaiatrics has a cannabis manufacturing license in Los Angeles and creates a unique product line that’s helpful for patients as young as four months old.
Charlotte’s Web is Nationally Known Today
The industry is challenging to work in and unfair in many ways, Ray says. Yet, when you see the profound effect that the medicine has on your child, it propels you onward no matter how many times you get knocked down. That is what keeps people like Ray, and the many other medicinal cannabis advocates, motivated to make a difference in the world. Its hard work but it’s so gratifying. Mirzabegian will continue to take it one day at a time.
Today, with help from people like Ray Mirzabegian, Charlotte’s Web is a national cannabis distributing company. After seeing the life-changing results in Charlotte and Emily, he knew that cannabis needs to be available for everyone that needs it. Ray says the end goal is to help improve the quality of life for children everywhere suffering from diseases like epilepsy, cancer, and more.
