The Grass Roots America Magazine Team attended the Cannabis Science Conference in Baltimore, Maryland earlier this year and saw Rylie Maedler take the stage as the Keynote Speaker on the Medical Cannabis Track. Rylie is accomplishing her goals and changing the world and laws, all while being a teenager and the CEO of her own cannabis oil company and foundation. She is an awe-inspiring activist and cannabis patient living in Delaware. She’s on a mission to share her story with the value of helping others benefit from cannabis legally. Rylie is in 7th grade and has been using cannabis since she was just 7 years old, first trying it in 2013. We spoke with Rylie and her mother, Janie, about their journey with cannabis, how it has impacted and transformed their lives, and how it has empowered them to share their story in pursuit of their mission to improve the lives of others around the world.
“I was diagnosed with bone tumors in October of 2013, after my family started noticing that my face was looking strange and uneven. My teeth also were very loose.” Rylie said. “It took a long time to get an exact diagnosis. After many scary weeks, we finally got a diagnosis of Aggressive Giant Cell Granuloma (AGCG) and then the tumor team began planning what to do.” She was just 7 years old when she was diagnosed with life-threatening bone tumors. The extremely rare disease behaves similarly to bone cancer and causes tumors to destroy bones.
“My mom had been looking into cannabis oils to help me with the tumors and decided there were no bad side effects and that she wanted me to have the best outcome.” Rylie had surgery on her tumors and developed a severe seizure disorder ten days later. “I had a follow up MRI in December where we learned how much tumor was left behind. The normal treatment at this point for AGCG is chemotherapy or immunotherapy, but we were thankfully given a chance to watch and wait. I would start treatment once the tumor started to grow again.”
Rylie’s mother, Janie Maedler, began cannabis treatment after Rylie’s MRI scan. “Right away, we noticed that my pain and inflammation got better.” She also saw improvement with her seizures. “I had regular MRI’s, and each time, the tumor left behind was shrinking, and my facial bones were regenerating at a quick rate. I ended up not needing any reconstructive surgery or dental implants as expected.” She is the only recorded AGCG patient in the world to have her bones grow back.
TODAY, RYLIE’S TUMORS ARE STABLE AND WE’RE SO THANKFUL TO HEAR HOW HER HEALTH HAS IMPROVED WITH CANNABIS MEDICINE.
Rylie, now a teenager, continues to share her story and advocate for those in need. She says, “My parents told me that if I did everything the doctors and nurses asked of me that they’d give me anything, within reason, that I wanted. As time went along and I made more friends with sick kids I started noticing things that were needed. I felt sad that a couple of other little kids died, and I was getting better every day. I knew my medicine was different and not available legally, but it was hard to talk to parents about this. I told my parents exactly one year after my diagnosis that I knew what I wanted: a way to help kids as much as possible. They said yes! I started off speaking at Rotaries and small groups about the lack of pediatric research for cancer and rare diseases. I wanted a way to meet families and bring joy to kids, so I gave away iPods! I also decided that I wanted to make my medicine legal for other kids to help their quality of life. I came out in the public to a Delaware Senator and our DEA. I begged them to help us make it legal for pediatrics.”
“I KNEW WHAT I WANTED: A WAY TO HELP KIDS AS MUCH AS POSSIBLE. “
Rylie’s Smile Foundation, her 501c3, became official in February of 2015. Rylie’s Smile Foundation is, “Focused on bringing the smiles back to sick children and their families by helping them achieve a better quality of life. We do this through providing health education, technology devices, advocating for more treatment options for seriously sick children and supporting research of less toxic therapies. When we know better we can do better for our children. As the foundation grows, we are looking forward to making a great impact in children’s lives globally.”
Rylie fought for other children to be allowed to benefit from cannabis, and Rylie’s Law passed 3 months later. Rylie’s Law allows children to use cannabis oils for medicinal reasons in Delaware. She also passed for allowance on school property and autism as a qualifying condition in her home state of Delaware.
In 2017, she founded Rylie’s Sunshine in order to research and develop cannabis treatments for overlooked targets. Their focus is to supply quality, medicinal, whole plant botanical oil to those looking for relief.
All of her accomplishments have fueled Rylie’s passion to continue her mission. “I’m super excited about going to countries and areas where this is completely new to them and helping to encourage them in their medical cannabis policies. I am looking forward to working on legislation concerning our schools antidrug program. I’m excited to grow my business to the point that we can give needed products to families who are facing sad sicknesses with their kids.”
From Rylie’s diagnosis to her creating her own companies and changing laws, she is on a mission to improve the lives of others around the world. Being a teenager is tough, but publicly coming out of the green closet to a U.S. Senator and the DEA is tough too! From such a young age, Rylie has proven to be a powerful patient advocate and activist, despite fighting for her own health and wellness. We deeply appreciate and applaud her and her team’s work to help families around the world!
On this mission alongside Rylie is her mother Janie. Janie started her mission to treat her child and give her the best quality of life she possibly could.
Treating a child with cannabis can be challenging for some parents. Rylie’s mother, Janie Maedler, explains, “In 2013, the challenges were very different than they are now. Just six years ago, it was harder to find CBD, especially CBD that was tested. Today, it’s a staple in dispensaries! I would say the biggest challenges are finding consistent products each time you need to purchase, transparency with the labels’ information since these are products given to your child daily, they must be fully lab tested.” Another challenge is finding a doctor who knows the truth about cannabis and its benefits. The family was working with a neurologist who claimed that Rylie must be addicted to cannabis and was the cause of her seizures. They moved on and found a doctor who worked with them and their medical choices.
For those looking for resources, Janie says, “I found that taking as many classes as possible helps! Cannabis Clinicians, healer.com, and even pubmed.com are great resources.” Janie says, “My family has found the most help by going to conferences and speaking to researchers in person. We are so thankful for Janie’s continued advocacy work and support for her daughter, Rylie. Janie’s message to other parents considering cannabis medicine is, “If what you’re looking for is for your child to live a better quality of life, cannabis is a great option. We have seen many kids with severely debilitating illnesses go on to lead productive happy lives after starting cannabis therapy.”
Rylie’s Smile Foundation also provides consulting to help families make choices concerning cannabis therapy.
There are several ways to support Rylie’s Smile Foundation. Sharing and supporting on social media platforms, as well as sponsoring, shopping, and donating to the foundation will help share her message and efforts to help those in need. The laws are changing, but until everyone has safe and legal access, sharing and supporting is key. It’s so inspiring to see such an empowered young lady stand up for what’s right and work so hard to make the changes needed for those all around the world.