Patient Story ~
Charlotte’ s Web
One Family’ s Story to Create Real Change for Medical-use Access
Today, CBD-infused products are widely available, from grocery and pet stores to beauty, health-food, and supplement shops. CBD’ s federal legal and commercial landscape changed through two major turning points in 2018. The FDA approved Epidiolex, a prescription medication containing purified CBD 1 and the 2018 Farm Bill 2 opened the agricultural and commercial hemp market.
Twelve years before those federal milestones, Paige Figi and her family welcomed twin daughters. Within months, Charlotte began experiencing seizures that would later be diagnosed as Dravet syndrome, a severe form of epilepsy. After years of unsuccessful treatments, the family turned to a high-CBD cannabis extract that dramatically reduced Charlotte’ s seizures.
Charlotte’ s response reached beyond her family and contributed to a national movement for patient access. Paige reflects on the research behind that movement, the risks of sharing Charlotte’ s story, and the regulatory work that remains.
Before CBD
Paige recalled that Charlotte began having seizures at around three months old. At first, they occurred weekly and could last from 20 minutes to four hours. Over time, they became more frequent, at one point occurring about every 30 minutes, or roughly 50 times per day.
Charlotte and Paige in 2010 by Molly Kopczynski, contributing writer
Charlotte was prescribed numerous medications, including some obtained from outside the United States, but none provided lasting seizure control, and each came with risks and side effects. At about two and a half years old, she was diagnosed with Dravet syndrome.
Despite repeated hospital stays and trying one option after another, Paige continued her search for relief for Charlotte. Paige’ s research led her to international studies involving cannabis extracts high in CBD and low in THC.
The Turning Point
Charlotte and Paige hiking in 2018.
Paige contacted physicians, scientists, attorneys, and state officials before deciding. She needed a product that was consistent, tested, reproducible, and continuously available.
She carefully tracked each dose and documented Charlotte’ s response as she would with any other medication. Because Charlotte had a gastrostomy tube and required respiratory support, even small changes had to be considered potential triggers for a seizure.
Charlotte was described as a“ super-responder” because, according to Paige, the effects were“ immediate and dramatic.” Her seizures decreased from roughly 50 per day to almost none, and she eventually discontinued her other seizure medications under medical supervision. She was able to walk, ride a bicycle, and, as Paige described it,“ participate in her own life.”
Not every child responded in the same way, but several remained stable for days or weeks, even though they had not been able to before treatment. The information became difficult to keep private.
One Family to a Larger Movement
At first, Paige hesitated to share Charlotte’ s story. She feared losing custody of her children and coverage that reduced the story to a headline about a child using“ marijuana.” She wanted the discussion to focus on the science, medical reality, and legal risk.
As Charlotte continued to improve, Paige felt the information was too important not to share. Before speaking publicly, she asked those growing and preparing the product whether they would be transparent about how it was grown, tested, prepared, and administered.
In August 2013, Dr. Sanjay Gupta, then CNN’ s chief medical correspondent, featured Charlotte’ s story in the documentary WEED. 3 As awareness spread, families relocated to Colorado seeking access to similar products. They became known as“ medical refugees” because they left homes, jobs, and support systems to live where the treatment was legally available.
Paige, Heather Jackson, and the Stanley brothers helped establish Realm of Caring to provide education and support. The Stanley brothers had previously developed the genetics that became
32 September 2026