We had the good fortune of meeting Rylie Maedler recently at the Cannabis Science Conference in Long Beach California. She’s an amazing young cannabis activist and patient who is working overtime to change not only the stigmatization of cannabis, but the actual laws as well.
ELM: Hello Rylie. Thanks so much for taking the time to talk to us today. Your story is incredible. Can you just tell us who you are, your story and what your background is?
RM: Hi. Thank you. Well, in the summer of 2013, when I was 7 years old, I started experiencing breathing issues, extreme exhaustion, loose teeth, and my face was becoming uneven. That early fall, I was diagnosed with Aggressive Giant Cell Granuloma Bone Tumors (AGCG), which ate away the majority of the bones in my face. My case was one of the worst ever seen. AGCG is an extremely rare aggressive tumor which eats away bones, primarily in the face for most cases. This tumor can cause serious facial damage, as well as deformation. The tumors ate away my palette, maxilla, sinus, left cheek, and the bottoms of my eye orbits. My doctors told me I would be deformed for the rest of my life. They told me the only way I could treat my condition was with chemotherapy. After one of my procedures, I also developed epilepsy. My mom was looking for ways to help me with my pain and swelling, and came across cannabis online. After some research, she decided to try it. Right away, we saw pain relief, but only a few months later, we saw bone regeneration, tumor shrinkage and my teeth roots regenerated. We later found out that cannabis also helped me with my epilepsy. Although I didn’t use chemotherapy, I was able to return to normal by using cannabis. I still use cannabis today for my epilepsy, and to make sure that my tumors don’t come back. I’ve been in remission for 7 years .
ELM: Really amazing. And you said before you’ve actually changed and created cannabis laws for kids?
RM: Yes. When I got out of the hospital, I felt guilty about the kids who were still there, fighting for their lives, stuck in hospital beds. I started the Rylie’s Smile Foundation to educate, advocate for better and safer access, and to help support research of less dangerous therapies. I felt bad that so many children’s families didn’t know about cannabis, or didn’t have the opportunity to try it. So in 2015, after a lot of work, Rylie’s Law was signed by our Governor which allowed sick pediatric children to have access to medical cannabis in Delaware. The following year I advocated for children to have access to their medical cannabis on school grounds and it became law in 2016. In 2017, my nonprofit wrote a petition to add Pediatric Autism as a qualifying condition and it passed. In 2018, I advocated for Compassionate Care which would allow our doctors to recommend medical cannabis for patients who have limited treatment options even if their condition is not on the qualifying list.
ELM: Wow, so that’s four laws that we have you to thank for. And what about your cannabis company?
RM: I started my cannabis company, Rylie’s Sunshine, to help provide safe, tested, quality products for patients like me. We have a registered cultivation and processing license in Virginia where we can ensure everything is done with the best standards. Rylie’s Sunshine is able to donate half of our finished product to Rylie’s Smile Foundation in order that families in need are helped on a larger scale.
ELM: You’ve done so much already, what are your plans for after high school? You want to go to college, work in cannabis, or do you have time to even think about that yet?
RM: I love acting and theater. I’d really like to do something with that but I also feel like I need to keep advocating. Maybe a political science major and I’ll minor in theater. I love doing plays and being artistic. So I’m not totally sure yet, but something like that. I definitely want to keep working as an activist and advocate for cannabis.
ELM: That sounds great. We’re excited to see what you do next. Is there anything else you’d like to let everyone know before we go? Final thoughts?
RM: Yes. I want to legalize medical cannabis for kids globally, and de-stigmatize it. If cannabis is de-stigmatized, people will actually see it as a medicine. Withoutcannabis I wouldn’t have the life I have today. I’m an Honors Student, have great friends, speak internationally, and despite my seizures and having had tumors I’m very active. I know cannabis can be a life-saver to so many, and help people, including kids to live the best life possible.
Learn more about Rylie’s story and the work she does at www.Ryliessmilefoundation.org.
Patrick Ian Moore