At the young age of 13, Rylie Maedler has accomplished more than most of us have midway into adulthood. Not only is this teenage powerhouse the CEO of her own CBD production company and research foundation, but she also has helped pass three laws granting access to medicinal cannabis to children under 18, gives talks at cannabis conferences across the world, and has found a way to live a healthy life, despite having one of the rarest and most debilitating diseases on the planet. While the word “inspirational” is grossly overused, there really is no other word to describe the young cannabis activist.
Rylie initially tried cannabis under troubling circumstances. Shortly after her seventh birthday, she swallowed a tooth. Within weeks, all of her teeth became loose and many more began to fall out. Rylie was initially ecstatic, thinking she was about to earn some cold, hard cash from the Tooth Fairy, but her mother didn’t share the same enthusiasm.
The doctors informed Janie Maedler that her daughter had Aggressive Giant Cell Granuloma (AGCG), an extremely rare degenerative bone disease that mimics bone cancer and causes tumors to eat away at the bones. Given the tiny prevalence of the orphan disease — it affects a mere handful of people worldwide — limited research has been conducted on the life-threatening illness.
Typically, AGCG is treated the same as bone cancer, with either chemotherapy or daily calcitonin injections. Janie didn’t want to go that route with her young daughter just yet, so against the law and the doctor’s orders, she decided to administer cannabis oil to Rylie after reading online that it could help with tumors. Within three months, Rylie’s bones began regenerating. (In fact, she’s the only recorded AGCG patient in the world to achieve bone regeneration with cannabis. She is also the only known case of a AGCG patient to have tumor remission.)
Today, half a dozen years later, Rylie is completely healthy — as long as she takes cannabis daily.
Since discovering the wonders of cannabis, Rylie became a prominent cannabis activist, having assisted in the passage of three measures in her home state of Delaware. First she helped pass Senate Bill 90, a.k.a. “Rylie’s Law,” which allows children under the age of 18 to use medical marijuana-based oils to treat intractable epilepsy and dystonia. Shortly after having a law passed in her name, the young activist passed two more laws. The first allowed students to consume medical cannabis on school campus and the second allowed children with autism to take it.
Before the school campus bill passed, Rylie had to go through a number of cumbersome steps to take her medicine on weekdays. First, she had to be signed out of school. Then she walked off school grounds, in which she crossed a literal bridge. There she could take her medicine and then finally return to school grounds to be signed back in and attend class.
“It was really hard to do every day,” Rylie explained via video chat. “Sometimes I was walking through storms just to take my medicine, and I knew that other kids wouldn’t be able to do that, like if they use wheelchairs.”
The next law she hopes to pass would allow school nurses themselves to administer medical cannabis to students, which, at the present moment, would be illegal. Luckily Rylie’s dad works at the school and is able to administer the medicine to his daughter daily.
In addition to her already established career as a lobbyist, last year Rylie founded and became CEO of Rylie’s Sunshine, a development company that produces and sells CBD oil. Rylie’s Sunshine works alongside her already established foundation, Rylie’s Smile, which she and her mother spearheaded roughly five years ago. Rylie’s Smile raises money with the hope to use the recipes they have created in forthcoming clinical trials to test for efficacy with pediatric illnesses.
She says she decided to research and sell CBD oil because she wanted something the actually worked.
“A lot of times, I had medicine from these places that contained, like, mold, and they would give me more seizures,” she said. “They were also very expensive. I thought I should make a company so kids would be able to get medicine affordably.”
The research component of Rylie’s Smile focuses on the impact CBD and other cannabinoids, such as THC and THCA, can have on a number of diseases, including Lyme’s disease, degenerative bone diseases, secondary osteoporosis, autism, and even skin grafting. In fact, one young boy the foundation is inspired by has undergone 48 skin grafting procedures after having been run over by a lawn mower. The foundation hopes to research the potential of cannabis to prevent the rejection of donor skin grafts by burn victims, as well as of those, like this young boy.
Despite all of her incredible work destigmatizing cannabis, researching cannabis as an effective, alternative treatment, and advocating for medicinal pediatric use, Rylie still faces numerous challenges in school.
After concealing her cannabis use for a year, she decided to come out about it. While most of her schoolmates’ parents were supportive, some tried to keep their kids away from Rylie.
Her fellow classmates, however, “didn’t really care.”
“They didn’t see any [personality] difference in me at all,” Rylie said. “It wasn’t making me weird. I was me, just healthier.”
A few weeks ago, Rylie encountered another challenge. Her school health department started their “drugs are bad” spiel, sharing videos that not only stigmatized all cannabis users, but spread blatant misinformation about the plant.
The video (which Rylie speculated was likely from the 90s) perpetuated the false notion that “pot makes you stupid” arguing that students are at a risk of lowering their IQ if they use cannabis. Rylie, who’s been using cannabis multiple times a day for the past six years, is not only an honor student, but also takes brain scans multiple times year to ensure that her brain is developing normally. (Spoiler: It is.)
“It made Rylie feel awful and that she was dumb and doing something bad,” her mom explained.
So the next day Rylie’s father spoke to her teacher who apologized and felt “terrible” about some of the comments she had made without considering Rylie’s situation. While screening the video is still mandatory curriculum, the educator promised she’ll be more sensitive next time when discussing cannabis.
Rylie and her mom are are working to help update the curriculum to reflect modern research, as well as the numerous benefits cannabis can offer people of all ages living with a range of mental and physical ailments.
With her small stature and adorable smile, Rylie has become a fierce advocate for cannabis, seemingly able to overcome every obstacle put before her. Cannabis allowed her to live a normal life, and surely, as she continues to age, she will keep doing everything in her power to help others like her discover the myriad of medical uses for what some believe is a miracle plant.
In sharing her story, Riley told Civilized, “I just want to help other kids not have to go through what I went through.”