How This Girl Changed Cannabis Laws in Delaware
When Rylie Maedler was seven years old, she was diagnosed with a rare bone tumour that attacked the bones in her face. Though their doctor prepared her parents Sean and Janie for the worst, Rylie made a startling recovery.
Secretly, the Maedlers had given Rylie cannabis oils. “The original intent was to stop this destructive and aggressive tumour from continuing to grow,” says Janie Maedler. “I also thought it would help with her pain and inflammation. It did all of these things and then some.”
In an effort to give other children the same benefits as Rylie had experienced, the Maedlers fought to have pediatric medicinal marijuana legalized in their home state of Delaware. Today, Rylie’s Law allows children to use medical cannabis oils for medicinal purposes.
From her home in Rehoboth Beach, Delaware, Janie Maedler talked about how her daughter’s personal struggle inspired an entire state to embrace the healing properties of cannabis.
You could barely see it. One of her eyes was not level with the other. They thought that it was stage four neuroblastoma.
The nurse pulled me into a bathroom and started telling me that my daughter was going to need me to stay strong when she goes through the process of dying and that I needed to be strong. It was like she took me back in the bathroom and slapped me in the face.
We were walking out of the hospital and I was trying to memorize her. She even slept with me for a few nights. I was trying to stay awake every single night to memorize her breathe. I remember holding her arm and thinking, “Someday her arm is going to be cold.”
Rylie was ultimately diagnosed with the rare bone tumour aggressive giant cell granuloma, which behaves similarly to cancer.
I connected with a group of moms who were using cannabis [to treat] their children. All of our children had tumours. We started talking and doing research together.
Through these mom connections in California I found a safe supply [of oil]. I was thinking, it’s illegal, so if I do this and I get caught, I need to have some kind of proof that this was working. I have to start it after she’s had most of her testing so I could compare how this is going.
[The healthcare workers] found that her bone regeneration was so fast and remarkable. I was giving it to her for the tumour and the side effect was it helped with her bone regeneration. That wasn’t my focus and it ended up being the big thing of it all. She ended up not needing to have more plastic surgery.
The Maedlers reached out to Republican senator Ernie Lopez about legalizing medical marijuana for pediatric patients. Lopez was infamous for his hard stance on marijuana, voting in 2011 against legalizing medicinal marijuana for adults.
We invited him over and he knew about Rylie because his children were going to her school. He told me later that he had a preplanned speech about how to let me down.
Rylie talked to him about how she was scared she was going to die and how cannabis had made a difference in her life. When she found out that she could possibly die from this tumour she prayed to God to save her. And then all of a sudden her mom found out about this plant that God had made and she felt like that was God’s answer to her.
When she started talking about how she was very scared of the tumour coming back, he just started crying. He said that he finally understood what we were trying to get through to him. He said he would actually do it. Our governor [Jack Markell] and [Lopez] surprised us and named it after Rylie.
Rylieis now 12 and travels with her parents telling her story at conferences and events on behalf of her non-profit foundation Rylie’s Smile Foundation.
Right now her tumour has been stable for four years. She has seizures now and then, but they are under control. Through the non-profit foundation, we are educating and [gifting] iPods and Apple devices. She wanted to give them all iPods, stuff to get their minds off what is happening, because she used her iPod as a distraction while they were taking blood. We also help parents financially with their medication. And we have a for-profit [Rylie’s Sunshine] that was inspired by Rylie, an R&D cannabis company. She is very active in the company. She is helping us with the vision and the marketing.
Sometimes she will hear adults talking about the endocannabinoid system and look at me and roll her eyes, like, what are they talking about? She is extremely familiar. I always tell my girlfriends when she hangs out with their kids, they are not going to learn any misinformation from my kid.
She wants to be a singer or a public speaker or an actor. I just started taking her to a shaman and they think that she will be a leader in some fashion. I am very interested to see what she is going to do.