Seven-year-old Rylie Maedler began losing her teeth in 2013. She thought she was “going to be rich with tooth fairy money,” but her mother Janie was concerned by the accompanying swelling in her face. As her daughter’s appearance changed, Janie decided to take her to the doctor. Hundreds of tests were performed over the following weeks.
The imaging discovered bone tumors beginning in her eye socket. They continued into her hard palate and jaw and around her teeth. Rylie’s doctors diagnosed her with Aggressive Large Cell Granuloma (ALCG), a rare, persistent disease with no known cause. A third of her face had to be detached to remove the tumors.
Rylie also began having seizures. Her physicians struggled to offer treatment that helped, which led to Janie doing her own research. The news of Charlotte Figi’s miraculous recovery from 350 seizures a week was making national headlines. One particular paper stood out to Janie as she combed through medical journals.
Researchers at the Hebrew University of Jerusalem and Tel Aviv University had published the results of a well-executed experiment in the October 2015 issue of the Journal of Bone and Mineral Research. They found cannabidiol (CBD) enhanced fracture healing and stimulated Lysyl Hydroxylase, an enzyme involved in bone healing. The study contained a large group of subjects and researchers. Past CBD investigations on the body’s biochemical structure had been small experiments, whereas eighteen total scientists collaborated on this effort.
Watching her child waste away, Janie Maedler decided to give cannabis oil a shot. She chose an oil containing CBD (non-intoxicating), THCA (non-intoxicating), and smaller amounts of THC (intoxicating). Rylie’s seizures immediately stopped, and her pain diminished. Her teeth, which had been falling out, began to grow back and her facial bones completely regenerated.
Despite their inability to help her and the miraculous results, Rylie’s doctors suggested the treatment was immoral and irresponsible, telling Janie that Rylie’s recovery was impossible. They were wrong. Though the medical community thought ALCG incurable and reoccurring, Rylie’s tumors disappeared and didn’t come back. That was four years ago. She’ll soon turn 14.
In the time since discovering cannabis, Rylie has changed the way people in her home state of Delaware view the plant. As a nine-year-old beginning the cannabis oil trial, she wasn’t aware of the legal and societal status it held.
“I knew I wanted to become an activist after I found out what my medicine was and why people were against it. I still didn’t understand why people would be against something that helped me so much, and I wanted other kids to be able to have it so they can get better and start feeling better and have a happier life. So, I decided to speak for medical cannabis and educate others about it and kind of get rid of the stigma of it,” Rylie has said.
A handwritten letter from the then ten-year-old to Delaware legislators evolved into Senate Bill 90, appropriately named Rylie’s Law. Governor Jack Markell signed SB 90 in June of 2015, making it legal for doctors to prescribe medical cannabis to children. This wasn’t Rylie’s first work as an activist.
“Right before Rylie’s Law was signed in June 2015, I asked for a foundation to help other kids,” she recounts.
In January of 2015, she and her mother established the 501(c)3 Rylie’s Smile Foundation.
“We advocate for better access, support research of less toxic therapies, and we help families financially. We go to different families, we talk about medical cannabis and how it’s good,” Rylie says. The non-profit also gifts pediatric patients devices like IPads to “help kids stay distracted from the scary things in the hospital,” the young leader explains.
After the success of SB 90, Rylie and her mom worked with Delaware Senator Ernie Lopez in the passage of Senate Bill 181, giving qualified pediatric medical patients the legal ability to use cannabis administered by a parent or legal guardian while on school grounds.
Rylie reflects, “At the time, I had to walk all the way off of school grounds just to take my medicine. I would be singled out, I would miss things in class, kids would be like, ‘Hey Rylie, why do you always leave school?’ and I knew that there were other kids who had it worse. [These kids] had oxygen tanks or wheelchairs, they wouldn’t be able to go out in thunderstorms or rain, and they wouldn’t be able to take their medicine like I could.”
Janie ran into an occasional problem with the oil she gave her daughter four times a day. Some batches would be moldy. Mold not only reduces the potency of cannabinoids but acts as an irritant itself to the immune and nervous systems. Rylie wouldn’t feel well when given the moldy oil, but high costs made it hard to simply discard.
They learned their issue was a common one, inspiring Rylie’s Sunshine in 2017, a company that produces mold-free lab tested cannabinoid oils. (THC and CBD are two of more than 150 cannabinoids found in marijuana.) The company also provides consultations for medical patients to determine what combinations of cannabinoids would be the best for their condition.
That same year, Senator Ernie Lopez continued his support of pediatric medical marijuana by successfully introducing Senate Bill 24. The bill increased access to a broader range of disorders. Today, children without life-threatening but no less challenging conditions like autism can receive medical cannabis in Delaware.
Rylie has used her notoriety and charisma to become an international cannabis advocate. Her brave vulnerability makes her story undeniable. Our society often needs something or someone in a desperate situation for it to question its practices, no better highlighted than in cannabis prohibition. As Rylie jokes with undertones of more than just a little truth, “everybody needs a near death experience to believe in it.”