Charlotte Figi: Patient, Advocate, Trailblazer, and Much More

Cannabis Patient Care, August 2021, Volume 2, Issue 2
Pages: 12-17

In this interview, Charlotte Figi’s story is told through the eyes of her father, Matt Figi, and the enduring legacy she has left on the world.

For many in the medical cannabis industry, Charlotte Figi’s name is synonymous with Charlotte’s Web—the famous hemp cannabidiol (CBD) company founded by the Stanley Brothers. Charlotte and her family’s journey with medical cannabis goes far beyond the famous CBD brand though. Here, we share Charlotte’s story through the eyes of her father, Matt Figi, and the enduring legacy she has left on the world.

Steven Matthew Figi (known as Matt) and his former spouse Paige were living the American dream in Colorado. They met in college, got married, shared a love for traveling, and soon started a family. Their eldest child, Max, was born in 2004 and in 2006 they had twin girls, Charlotte (known as Charlie) and Chase. When Charlotte was 3 months old, she had her first seizure and the Figi’s lives would be forever changed (1).

Matt explained that after the first seizure, Charlotte had about one seizure a month during her first year. Each time would result in an ER visit and oftentimes a dose of valium, or other addictive drugs such as barbiturates and benzodiazepines, to give Charlotte a chance to rest. Eventually, the Figi’s decided to take her to Children’s Hospital Colorado when she was 3 years old to have an expensive blood test done. There they discovered that she had a rare genetic disorder called Dravet syndrome. “She had a mutation of the SCN1A gene, and this is what specifically caused her to have Dravet syndrome,” said Matt. “So, the next logical question would be is, what is Dravet syndrome? It’s one of the worst possible forms of epilepsy one can have and it led to Charlotte having numerous tonic-clonic seizures, formally known as grand mal seizures.”

According to the Epilepsy Foundation (2), Dravet syndrome “is a rare, genetic epileptic encephalopathy that gives rise to seizures that don’t respond well to seizure medications. It begins in the first year of life in an otherwise healthy infant.” Treatment options are usually a combination of drugs that a team of doctors help patients determine. Today, cannabidiol (CBD) and an FDA-approved purified, oral solution form of CBD called Epidiolex are included as treatment options, but when Charlotte was first diagnosed those treatments were not available.

“She was on as many as 17 different pharmaceuticals over time, never about more than five at any given time, but Dravet syndrome and the type of epilepsy that she had was known as intractable epilepsy,” said Matt. “No matter what neurological epileptologist we spoke with, we really never found any efficacious treatment via pharmaceuticals for controlling her epilepsy. At the age of five is when it was getting really bad, and she was having as many as 300 grand mal seizures or tonic-clonic seizures a week.”

Basically, Charlotte was having a seizure every 15 to 20 minutes. Matt also explained that there’s usually a certain amount of time that any person would have to go through to recover fully from a seizure, but with so many seizures taking place it left Charlotte in a vegetative state. They had to put in a G-tube—a stomach feeding tube to make sure she was getting the nutrients she needed. She was confined to a wheelchair and she couldn’t talk. At that point, there were no other good options to help Charlotte so Matt and Paige knew they needed to find another solution to help their daughter.

The Road to CBD and Charlotte’s Web

Matt was working in Afghanistan at the time—usually doing several months overseas and several months back home—where he was using his former military skills as a Green Beret to help train soldiers to track terrorism using software. This allowed him to work a few months at a time at a high paying job to help offset Charlotte’s medical expenses and still have big blocks of time to spend with his family at home. Matt explained that any down time he had in Afghanistan was spent Googling and searching for alternative solutions to Charlotte’s condition. It was during one of these searches, that he came across the story of Jason David in California who was using large amounts of CBD to treat his son Jayden’s Dravet syndrome (3). David’s story showed success with CBD for controlling his son’s epilepsy.

“I immediately got on a satellite phone and I called home to Paige,” Matt explained. “I said, ‘Paige, I have no idea how you’re going to pull this off, but we have got to try CBD. We’ve got to try cannabidiol to give Charlotte another chance.’ And so, we did that.”

Of course, back in 2012 it was no easy feat to get medical CBD in general, but especially for a child. “Back at that time, Charlotte being five years old, she would have literally been the youngest medical cannabis patient in Colorado,” said Matt. “Given the fact that this was a child, you had to have not one, but two doctors sign off on promoting that this is a good idea.”

This presented a challenge for the Figi’s to proceed, but through Paige’s persistence she was able to find those two doctors: Dr. Margaret Gedde and Dr. Alan Shackelford. In an article with CNN (1), both doctors explained that Charlotte and her family had exhausted all other treatment options and therefore they felt the potential benefits of CBD outweighed any possible risks.

Initially, the Figi’s good friends Mike and Candy Jackson were able to help them try CBD. “Mike Jackson drove up to Denver from Colorado Springs and he sourced out a particular strain of cannabis that had high amounts of CBD,” said Matt. “He came home with it and our friend helped make it into a tincture that we gave to Charlotte. She went seven days seizure free for the first time in longer than I could possibly remember.”

The family knew that they were on to something amazing for Charlotte. They decided to put more time and research into finding a product that was safe, laboratory tested, and made in a good, sustainable way. Eventually the family was introduced to the Stanley Brothers and Joel Stanley in
particular (4).

The Stanley Brothers have run a medicinal cannabis operation for quite some time. When they met with the Figi family, they had one particular strain of cannabis that they called the “Hippie’s Disappointment” because it was low in THC. “What’s funny about this is they knew it was unique,” said Matt. “They knew it had properties off the charts that were helpful and medicinal, but they couldn’t really find anyone interested in it because it didn’t give the typical associated psychoactive high.”

Matt pointed out that when they initially met, Joel Stanley was hesitant to give this hemp CBD product to a child. Several other people that the Figi's met with seemed more focused on profits rather than the patient. “I just have to say with specificity, Joel is the only medical cannabis provider that showed any amount of hesitancy, care for the patient, or reluctancy in doing this,” he said. “Everyone just wanted to make a buck except for him. To be honest, that’s why we chose him—that’s why we went with the Stanley Brothers—because they actually care about what they do.”

The Stanley Brothers went on to name their company in Charlotte’s honor; it is now known world-wide as Charlotte’s Web (5). The Stanley Brothers are a unique family of seven brothers that set out on a mission to help medical cannabis patients. According to their website (6), the brothers initially focused on helping cancer patients by researching the potential health benefits of CBD and other cannabinoids. A statement on their website reads (6), “This endeavor led them to search for the optimal genetics, ultimately discovering them in wild hemp that grew across middle America. These genetics would later become the basis of their hemp-based CBD products, named after a brave little girl, Charlotte Figi, who struggled with catastrophic epilepsy.”

Of course, CBD was not a cure-all for Charlotte. Matt stated that it gave a tremendous improvement to her quality of life and reduced the frequency of her seizures. “She went from having 300 tonic-clonic seizures each week to maybe 1-3 a month,” he said. “This treatment allowed for so many things to happen. It allowed her to get her quality of life back. She started walking and talking again. It allowed her to start eating on her own again. Then over time, we took her wheelchair and we hung it up on a hook in the garage because she didn’t need it anymore. She started riding her bicycle again.”

Sadly, Charlotte passed away in 2020 at the age of 13. Her father was passionate about describing the amazing life she led thanks in large part to Charlotte’s Web. “I took her rafting. I took her mountain biking on one of those trailer bikes. We did all sorts of things together,” he said “She led a great life, which she would not have been able to do without Charlotte’s Web.”

Matt also described how with the help of CBD they were able to slowly wean Charlotte off the strong pharmaceuticals she had been taking. “We made a choice to very slowly and carefully, in a methodical way, to wean her off of every single one,” said Matt “Over the course of a year, we achieved that. Sometimes it got worse before it got better, but over the course of a year, we got her off every single pharmaceutical she was on. I don’t feel we’ve could’ve done that without CBD.”

Sharing CBD Knowledge

As word started to spread about the amazing success the Figi’s were having with Charlotte’s treatment, they began getting requests for interviews with all sorts of local media outlets. Matt and Paige were very careful and slightly hesitant to share their story with just anyone. They decided to wait for the right opportunity.

Eventually, CNN contacted them with an interview request from Dr. Sanjay Gupta. “Our ears really perked up at that request. Paige definitely thought this was the opportunity we were waiting for,” said Matt.

So, CNN came out to the Figi’s home in Colorado Springs for a week and they filmed every day. “Dr. Sanjay Gupta himself read to my daughter Charlotte—her favorite story The Bear Snores On—and he interviewed both me and Paige. He literally brought us to tears, in a good way,” said Matt. “I really believe that was the fulcrum point in this effort to give CBD the proper light and attention that it deserved.”

The interview with Dr. Sanjay Gupta appeared in the CNN docuseries Weed (1,7), which aired in August 2013. Dr. Gupta continued that series for several episodes and eventually publicly came out in support of medical cannabis after considering more research and stories such as Charlotte’s that point to its benefits. “I really appreciate his professionalism, not only as a surgeon, but as a journalist, because he came out publicly and said he changed my mind about medical cannabis,” said Matt.

After their interview aired, word was out that the Figi’s were on to something groundbreaking with CBD. By the time they did that interview, Matt and Paige were committed to CBD and knew that it was the right treatment for Charlotte–nothing was going to change their path. “The interview didn’t change us, but I think it changed the world,” said Matt. “It provided that global awakening—that catalyst—for people to finally open their eyes and start trusting the beneficial medicinal properties of a plant.”

The impact of that interview was far reaching though. Matt recalled a time after Weed 1 aired when he was in the airport returning home from Afghanistan and people recognized him from the show and stopped to thank him for speaking out. “I honestly don’t feel that it was ever a choice. It was just something that I would hope any parent would do for their child if presented with the same circumstance,” he said. “It wasn’t a choice. It was just the next logical course of action I had to pursue. And thank goodness, both Paige and I agreed on this decision.”

Charlotte’s success with CBD led other families to contact them as well. “We had families upon families knocking down our door saying ‘Hey, I heard you had success with CBD. Tell me about it,’” said Matt. “These people were given the endearing name of ‘medical refugees’ because they were leaving their home states and coming to Colorado for access to medical cannabis and getting two doctors to sign off so that their kids could have it as well. Hundreds upon hundreds of families were having the same efficacious success.”

Matt shared that Charlotte’s medical team was neither for nor against the use of CBD. He said it felt like they were kind of turning a blind eye to it, even despite Charlotte’s astounding results. He believes there is still a lack of acceptance specifically from the medical scientific world. “I think this should be one of the first courses of action a neurologist or epileptologist should offer. It’s harmless, it’s efficacious, it’s natural, it’s organic,” said Matt. “I literally stand before you today and I cannot think of one bad side effect with CBD.”

Matt expressed how thankful he is that nowadays more research and clincal trials are being conducted on a regular basis to study CBD more closely.

“And you know what else? All those hundreds of parents that were treating their children in the same manner, you know what they noticed? They noticed that their kid’s immune systems got stronger and therefore they went to the hospital a heck of a lot less,” said Matt. “CBD aids your digestive tract and it boosts your immune system. These kids were staying out of the hospital for the first time ever. And that’s this wonderful, overwhelming side effect that our family—and hundreds of other families—noticed.”

The Realm of Caring

As pioneers into CBD treatment for children, the Figi’s self-taught knowledge continued to grow. Matt explained that their dosing protocol for Charlotte came with a lot of care, time, and thought from everyone involved—from friends and other medical cannabis families. Eventually, Paige and her good friend Heather Jackson got together and created a 501c organization called the Realm of Caring (RoC). The RoC became a great resource for themselves as well as countless other families.

The RoC started as a patient advocate support group that could mentor and help people understand the best ways, the best ratios, and the best practices to provide that efficacious treatment. Today, RoC’s mission is to “improve lives through research, education, and community” (8). According to their website, the RoC helps to fund and conduct research to “learn more about cannabis and its effects while legitimizing the therapy.” The nonprofit is also involved in education efforts and community outreach.

On April 7, 2021, the RoC held a benefit concert in honor of Charlotte called "Rock the RoC" (9). Matt explained that Heather Jackson spearheaded Rock the RoC and made this amazing event happen on the anniversary of his daughter’s death. The idea was that we wanted to have a proper funeral service for Charlotte, but good luck doing that in these times of pandemic-filled COVID-19 restrictions, so we kept waiting a few months and waiting, but nothing changed,” he said. “Then Heather, just being the angel that she is, suggested this event. So, on the anniversary of her passing, we chose to have this online celebration of her life. This is the first annual Rock the RoC. Hopefully, there’ll be many to come.”

Governor Jared Polis of Colorado even made April 7th Charlotte Figi Day in a proclamation that went before the House of Representatives. Matt stated that in Colorado, from here forth, Rock the RoC will be held on Charlotte Figi Day.

The concert included many notable artists such as Jason Mraz, Graham Nash, Glenn Phillips, The Avett Brothers, and many more. “It’s a fascinating watch because it’s kind of like a music concert, but it’s constantly interspersed and interlaced with comments from people such as Dr. Sanjay Gupta, Heather, Paige, me, Joel Stanley, and many others involved with the RoC or friends of Charlotte’s,” said Matt.

“We all gave our comments about this journey and what we've learned from our trials and tribulations,” said Matt. “I'm so incredibly thankful for everyone's efforts in that regard because it finally gave us the closure we needed and provided us the avenue to have a proper ceremony for Charlotte. Now, even better, it's going to be a yearly event. I hope it grows because we don't want Charlotte's impact on the world—her shining light—to be diminished, we want it to grow. We want this movement to grow. We want education and awareness to grow.”

Rock the RoC is available to listen to on demand at:
https://rocktheroc.org/.

Charlotte’s Legacy

It is clear to see that Charlotte Figi and her family—Matt, Paige, Max, Chase, Greg, and Aspen—have played a major role, if not the biggest, in normalizing CBD and medical cannabis use. Matt said that is the most obvious thing she will be remembered for. She is the single largest ambassador and a symbol for the success of CBD and it’s efficacious treatment for many things, especially epilepsy,” he said. But in the words only a parent could share—there is so much more to remember about her. “Between you and me—and I guess between you, me, and the world—there’s just one single fact about Charlotte that only the people that truly spent time with her, in her presence, knew: there was just no one better in the world at making you be present. Drop your phone, put it away. Look me in the eye and spend some time with me. Right here, right now, be present. Man, nobody did that better than Charlotte.”

In honor of Charlotte, let’s all be more present with each other and remember this brave girl and her family that have done so much to share their CBD knowledge and experiences to help others.

References

  1. https://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/index.html.
  2. https://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome#:~:text=Dravet%20syndrome%20is%20a%20rare,to%20severe%20SCN1A%20gene%20mutations.
  3. https://thejaydensjuice.com/our-story/.
  4. https://www.stanleybrothers.com/.
  5. https://www.charlottesweb.com/.
  6. https://www.stanleybrothers.com/our-company/our-history.
  7. https://www.youtube.com/watch?v=wdQ2q4tWCjw.
  8. https://realmofcaring.org/about/what-we-do/.
  9. https://rocktheroc.org/.