From Pediatric Patient to Teenage CEO: One Young Woman’s Journey with Medical Cannabis

Cannabis Patient Care, October 2022, Volume 3, Issue 3
Pages: 16-20

Rylie Maedler shares her amazing journey from pediatric patient to teenage advocate. As a child, she was diagnosed with a rare form of cancer with a high recurrence rate and, through treatment with cannabis, is now in remission. Here, she shares her incredible story to change laws and hearts with her powerful message.

Rylie Maedler has led an amazing journey from pediatric patient to teenage advocate. As a child, she was diagnosed with a rare form of cancer with a high recurrence rate and, through treatment with cannabis, is now in remission. She shares her incredible story to change laws and hearts with her powerful message. Rylie has presented around the world, petitioned lawmakers, organized and currently runs a foundation and a nonprofit, and has been featured in documentaries. In this in-depth interview, Rylie shares her motivation for education on alternative pediatric treatments, the challenges she faces in her work, and her ongoing efforts through her organizations to ensure access to medical cannabis.

Life as a Patient and Cannabis as a Treatment

At first glance, 16-year-old Rylie Maedler lives an average life in Delaware, but behind her ever-present smile is an incredible story. Rylie’s childhood was turned upside down with a life threatening diagnosis. “In second grade, I was diagnosed with aggressive giant cell granuloma bone tumors. They ate away my palate, maxilla, left sinus, and the bottom of my eye orbit. I was supposed to be left with no teeth and be deformed for the rest of my life,” Rylie explained. “My doctors told me that I should go on chemo, denosumab, or interferon. Those are the treatment protocols that are standard for this tumor.”

Rylie’s mother, Janie Maedler, was able to negotiate a “watch and wait” period to research alternative options to relieve Rylie’s pain. Cannabis continually popped up, so they decided to try it, though it was not legal in the state of Delaware at the time.

There was not much research on cannabis for this type of tumor, so it was trial and error for a while. “I tried THC and CBD, and I gave her THCA, once I could find it,” Janie recalls. “I separated them so that we could give them at different times. We had to play with the dosing to find the right variety of plant extract that agreed with her. In the beginning, there were a few times where I would start her on a THC and it would make her feel anxious or it might upset her stomach, and then we would change to another,” said Janie.

“Right away, we saw good results in my pain and swelling, and only a few months later, we saw bone regeneration and tumor shrinkage, which we didn’t expect at all,” said Rylie. “From just using cannabis, I didn’t have to use chemo, interferon, or any sort of radiation, and I’ve been in remission for nine years.” Today, Rylie continues to take CBD and THCA in oil form daily as a maintenance regimen and for epilepsy, which started 10 days after one of her procedures as a child. She continues to get scans every two years.

However, with the overwhelming challenges and success with cannabis as a treatment, Rylie also met with the lack of education around cannabis and the stigma assigned to it. “When we first came out to the public about me taking cannabis, a lot of the kids in my elementary school didn’t really know what it was, but a lot of their parents told them to stay away from me because I would be a bad influence, or they were scared of me somehow sharing my medicine,” said Rylie. “You know those drug videos that they show in gym class talking about different drugs? Well, as a patient, I have been forced to watch those videos. Whenever they would talk about cannabis, they would just show it as a drug and they would talk about how it can make you go insane, cause psychosis, and make your IQ drop. It would always make me feel so uncomfortable to watch those videos in class because it’s not true.”

As a result, the beginning of her efforts to change the stigma around cannabis started early in her life. “As I got older, once I was in fifth grade, people definitely started to get more used to it, and as years have gone on, people have been more comfortable,” she said.

The challenges of the stigma may have lessened in some areas, but Rylie still encountered other resistance within the cannabis industry itself. “I’ve had trouble being taken seriously because of my age. Having the positions that I do, a lot of people would see me as just the poster child for something. As if I’m like Wendy from Wendy’s, I’m a face, and I don’t really have anything to do with what’s going on. I have that issue where people just don’t see me as someone working. They just see me as a kid, just putting her face on everything and her name on everything.”

Moving Forward with Advocacy, Education, and Research

Knowing she was entering into an atmosphere of resistance, Rylie was still determined to face it head on. Because of the success she found with medical cannabis, Rylie wanted to spread her story and touch as many lives as possible. While still in elementary school, she began her mission to help other families know about safer treatment options. During her own initial treatment, she became friends with children in the hospital and was familiar with their stories.

“Once I left the hospital, I wasn’t sure why other kids couldn’t have access to cannabis,” she said. “I asked my mom, and she told me that cannabis was illegal. And I said, ‘Why don’t we change that?’” Rylie contacted and petitioned her local legislators and in 2015, Senate Bill 90, also called “Rylie’s Law,” was introduced to allow children in Delaware to use cannabis oil to treat a variety of conditions. The bill was passed unanimously in the Senate and House of Representatives. Soon afterward, Rylie helped introduce Senate Bill 181, which allowed medical cannabis on school grounds (1). Rylie and Janie have shared the draft of the law with advocates in many states, including Maryland and Colorado, to help them apply the same legislation for their schools. Rylie also worked to have autism added to the list of qualifying conditions that could be treated with cannabis, and helped pass the Compassionate Use Law, which gives doctors the ability to prescribe cannabis for any condition they feel would benefit from it, as long as they have research to support it.

There was still work to be done, and Rylie was just getting started. “In third grade, I started the Rylie’s Smile Foundation. That’s a platform I use to advocate for better treatment options, such as cannabis and increased safe access,” she said.

Through her foundation, she began public speaking. “The purpose of my foundation is to educate families about medical cannabis, advocate for safe legal access for pediatrics, and support research of cannabis,” Rylie explained. In sixth grade she began traveling and presenting, first at the Cannabis Science Conference. Afterwards, she presented at conferences across the country and around the world, including countries such as Australia, Israel, South Africa, and Hong Kong. Her biggest learning experience, Rylie recalled, was in Hong Kong. “A lot of people knew nothing about cannabis, and I was called a ‘disruptor’ by the company that invited me to present. Everyone else at their event was talking about business, technology, and innovation, and I was talking about cannabis, how it’s helped me and other people, and my foundation. I got so many people coming up to me and asking strange questions that you would never be asked here. A few people asked me, ‘Do you start to hallucinate when you take cannabis?’ and ‘Do you see circles or spinning things?’ They had absolutely no idea what it was like because they had never really heard about it,” she said.

Janie also recalled reactions from people after a conference in Australia. “The medical doctors were all scared to prescribe it because it had just been legalized there to prescribe to their patients. But they all told me that, after hearing Rylie speak, they were not scared anymore to prescribe it for their patients because they felt like it was not going to harm the children,” said Janie.

In addition to providing education, Rylie and Janie continued to support the plant medicine that helped them so greatly. “In 2017, I founded Rylie’s Sunshine. We grow and process hemp, such as cannabichromene acid (CBCA) and cannabigerolic acid (CBGA) dominant varieties, on our 25 acre farm in Virginia (Eastern Shore of Virginia or ESVA), sustainably and organically, and we make products that are safe for all patients,” said Rylie. “50% of what we grow goes out to families in need, and the other half we sell, and the funds go back to our company. We want to own a patent for the safety of the people who want to use our strain for specific reasons. It keeps people from selling imitations of the strain that we have. If people make imitations, it could be detrimental to the people using it.”

In working closely with Rylie's Lead Advisor, Dr. Reggie Gaudino, from Front Range Biosciences (FRB), Rylie's Sunshine is able to assist FRB in the research of plant performances to make quality medicines. Rylie's Sunshine also recently purchased the breeding rights to the plant that Rylie has used for many years. “Most of the research that we’re doing with Front Range is pretty much how certain phenotypes do in our region with natural soil and irrigation water,” Janie explained. “Everything is organic and natural. We’re trying to figure out which phenotypes do really well in our environment and which do not.”

Some of the plants that they grow have a special connection to them. “The specific strain that we purchased the breeding rights to is the same strain that Rylie has used and a few other children with the same pathology of tumor that she had,” said Janie. “And they’ve all been successful with it, so we’re trying to figure out what makes it different from other strains and other medicines in general.”

Her full recovery from such disfiguring bone tumors and remission has pleased and astounded all of Rylie's doctors. “Currently denosumab is the standard protocol for aggressive giant cell granuloma bone tumors,” said Rylie. “It was chosen after a doctor had used it on two girls and wrote a medical paper on it. So, there wasn’t really much research behind the denosumab.” Rylie has been trying to change the treatment protocol recommendation due to the amount of research on cannabis as treatment. “Cannabis put me into remission and I’ve stayed in remission for nine years, and I didn’t have to go on chemotherapy. From the people we’ve worked with through our foundation, there’s been three other kids with the same type of tumor as me who have been put on the same type of regimen that I was on, and they were all put into remission as well. So, four people in total.” By this measure, cannabis has been unofficially tested as a protocol more times than the current recommended regimen, and with good results.

Encountering and Overcoming Obstacles

As Rylie entered more into her advocacy role, the larger picture of how hard it can be to use cannabis to treat pediatric illnesses became clearer. The push for expanding safe access and the chance to use cannabis as a treatment proved to be an uphill and continuous battle.

An example of one obstacle, which is not usually mentioned in Rylie’s presentations, involves the local children’s hospital in Delaware, Nemours Children's Hospital (formerly known as AI duPont), where Rylie initially went to receive treatment for her tumors. The hospital had voiced their support of passing Rylie’s Law, with a few amendments. “Then about the night before Rylie’s Law was signed, they withdrew their support,” Rylie said. “We have learned that the hospital is actually very against medicinal cannabis.” One doctor at the hospital had even tried to revoke Rylie’s medical cannabis card at one point, saying she was addicted to cannabis and that it was not actually helping with her seizures.

Janie explained that this experience was a hard lesson for them regarding advocacy and changing laws. “You can take a group or company’s support, but you also need to look beyond it,” Janie explained. “We learned after the law was signed that by making an amendment to the law, the hospital, in essence, was in control of the law. And then the minute that they withdrew their support, that meant that it was going to be near impossible for any child in Delaware to get a medical card. Thankfully, the 2% of doctors that are not employed by Nemours stepped it up and pretty much came to the rescue of all the children in Delaware.”

“Governor Markell saw that it was important for me and so many other children in the state,” Rylie added. “One of the things that we’ve learned when people are passing legislation is that when a large company like that steps in to give their support, you do not rely on them.” They also learned that while enacting laws are crucial, more support is needed to ensure medical cannabis actually reaches the children who need it.

The Importance of Sharing Other Pediatric Patient Stories

Through their work, stories of others’ experiences with trying to use medical cannabis as a pediatric treatment came forward. Even though medical cannabis is legal in several states, families still encountered resistance to its use in hospital settings and from trying it as a last resort. Families of children undergoing treatment reach out to Rylie and Janie through Rylie’s Smile Foundation to share their stories and ask for help. “There was one family visiting from New Jersey,” Janie recalled. “Their child went into seizures in the emergency room of Nemours. So, the mother immediately used a nose spray and was able to stop the seizure. And the whole staff was like, ‘wow.’ But the doctor called Child Protective Services [CPS] on the family. We got involved and we contacted an attorney that would represent the family.” In addition to having their child in the hospital, the family now had to deal with the fallout of being reported to CPS for cannabis use, though the CPS agent sent to monitor the family in the hospital was understanding. “The family said that CPS even thought it was crazy. They are totally fine with it in our state. It’s just the hospital policy that it could not be on the premises,” Janie added.

Some stories highlight the tragic consequences of withholding treatment opportunities for children with severe conditions. Janie also shared the experience of a friend and parent. “Her child was severely autistic, but he also had epilepsy,” Janie recalls. “I remember he was in the ICU and he had been in status epileptic seizures and was pretty much in a coma. The parents had ordered Charlotte’s Web, and the father was going to bring it into the ICU, he had it in his pocket. The hospital told him that if he stepped foot in there with the Charlotte’s Web, they would call security. And the child died. The parents never got a chance to even try it, and it haunts the mom to this day that they were so close. They were within feet of him with this oil in their hand and they couldn’t even try it. Even though the outcome may have been the same, I wish that the education would get to those advisors and that medical staff to just ease up a little bit. Especially when a child is in such desperate need,” Janie said.

In another story, one that Rylie speaks about in her presentations, an infant was sent home from the hospital with hospice and given two weeks to live due to a severe Mitochondrial Disease. Several people, including a senator who helped with Rylie’s Law, advocated for the infant to be legally recommended medical cannabis as soon as possible, Janie explained. “They asked the hospital, ‘Could you get this baby on medical cannabis because nothing’s going to help her?’ Why not? She’s dying,” Janie stated. “The parents called me crying, saying that they didn’t know what to do because the doctor told them it was no use to try it. He did not want to take that risk. We talked to the state and the state talked to a palliative care doctor who finally bent and approved the medical card for the child. The child's life was extended for about a year and also eased her painful spasms, giving her family more time with her. The family will write to us once in a while still to this day to thank us.” This case happened soon after Rylie’s Law was passed.

Where to Go for Help and How to Advocate

With such a large need for education and resources, Rylie continues to help connect parents and their children with the resources they need. “We have a lot of information on my foundation’s website, RylieSmileFoundation.org,” Rylie explains. “We have classes and we have doctors and consultants that parents can speak to. A lot of parents will come to the foundation and we’ll give them an introductory course to cannabis as medicine. They take a course that certifies them and helps give them the basics. But if they want specific information about their child’s ailment, that’s when we connect them to a doctor or a nurse or even a researcher to explain more to them in detail as to how they can support their child medically with cannabis. When we were starting out, it was a lot of having to take pieces of a puzzle to put it together.”

In response, Rylie and Janie continue to advocate and connect parents with the resources. “Some kids don’t have that luxury of time like we had,” Janie explains. “So, when parents call us we will do everything we can to connect them to safe access, connect them to who they need to talk to for their medical card and for support in their own state, and then to connect them with some type of medical advisor so that they know the steps that they need to take with their child.”

Equally important is the need to share stories. Rylie’s advice for anyone interested in joining their efforts for advocacy and education is to do your research and share your story. “Speak to as many medical people as you can. Go to conferences and share either your story or what you know about cannabis and do your best to educate as many people as possible, especially medical professionals. Because the more people who are educated on it, the more the stigma of cannabis will go away, and the more widely accepted it will be, and the more people will be willing to learn about it. Help people feel comfortable that you’re not there to go against them, you’re just there to talk and share your story.”

What the Future Holds

Where does Rylie’s journey go from here, what is she working on now, and what does she hope to accomplish in the future? One thing is for sure: Rylie is still actively advocating for others. “Currently, people living in government housing cannot access a medical card even if they live in a medically legal state, just because they live on government funded property, and they abide by federal laws instead of state laws,” Rylie explains. “I’m speaking to federal legislators to see what we can do about that and see if we can get people living on government property who need cannabis as medicine a way to access it because it’s not fair that they can’t.”

Even after accomplishing so much for so long, Rylie plans to keep pushing forward in the future. “I’m definitely going to keep doing my work because there’s always more work that can be done in medicinal cannabis, especially when it comes to legislation and education,” Rylie explained. “In the future, I hope to see more acceptance, legalization, and rescheduling of cannabis so it can be more widely accepted as any other medicine or any other pharmaceutical.”

“But my dream job, although it may not be realistic, is acting. That would be something that I would love to do. When I go to college, I plan on minoring in acting, and I don’t know what I want to major in yet, but I might get into public policy and international affairs.”

For someone who has already accomplished so much before the age of 18, any future plans are within the realm of realistic, thanks to a little help from medical cannabis.

Reference

  1. https://dhss.delaware.gov/dhss/dph/hsp/medmaroclaw.html.