The summer of 2013, 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 any form of bones, primarily in the face for most cases. This tumor can cause serious facial damage, as well as deformation. It has an extremely high reoccurrence rate, and my tumor team warned my family that IF the tumor was to be successfully treated, it would more than likely return. 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 I would have no teeth as well. I would need many reconstructive surgeries, and get teeth implants at 16. The "only way" I could treat my condition was with chemotherapy for a term of 18+ months. After one of my procedures, on top of these issues, 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, my teeth roots regenerated, and tumor shrinkage (which was definitely not expected). 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 and have tumor check ups yearly.
After I left the hospital, I felt guilty about the kids who were still there, fighting for their lives, cooped up in hospital beds. A while after I left the hospital, my mom told me that my medicine was illegal. I wanted all of the sick kids still there to have access. Almost a year after my diagnosis, with improving results my mom admitted to a couple of my doctors how we achieved these results and asked for their help in finding a way to get it legally. We were sent to a specialist who said I was the perfect candidate for cannabis after he had studied my medical records. He said his hands were tied though, and he wouldn't be able to legally help me since it was against the law for children to have cannabis. I asked, "Why can't I change that? So I could legally take it as well as other kids." He said that it would be impossible to change and that he was sorry. He wouldn't even charge us that day because he was so sad for me.
I soon started the Rylie's Smile Foundation to educate, advocate for better and safer access, and to support research of less toxic therapies. I felt bad that so many children's families didn't know of cannabis, much about it, or didn't have the opportunity to try it. It was taboo to even speak about! During the early days of our foundation, we gave Apple iPods to children, in order to be able to reach out to families easier and find the opportunity to educate them on medicinal cannabis . In 2015, with a lot of work, Rylie's Law was signed by our Governor which allowed sick pediatric children to have access to medical cannabis in our state. I've continued to advocate for better laws for children through Rylie's Smile Foundation. 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. Currently the foundation is still working to improve better access for families, reduce the stigma and supporting research.
In 2017, I started a cannabinoid company, Rylie's Sunshine, to help provide safe, tested, quality products for patients. Through this company we are able to support the non profit's larger goals of helping families with access and furthering research. We have a registered cultivation and processing license in Virginia where we can ensure everything is done with the best standards. We are partnered with Front Range Biosciences to research plant performance in the MidAtlantic Region. With their help we are also able to reach our goal of providing access to families in need. 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. As we grow our ability to help families also grows.
I want to legalize medical cannabis for pediatrics globally, and de-stigmatize it as well. If cannabis is de-stigmatized, people will actually see it as a medicine. Without it I wouldn't have a life nearly as good as mine today. I am a Honors Student, have great friends, speak internationally, and am very active despite my seizures and having had tumors. I know cannabis can be a life-saver to so many, and help people live the best quality of life possible.
Isn't that what we all deserve?