Rylie and Janie Maedler, Delaware

Janie Maedler wasn’t planning on raising a medical cannabis activist. She just wanted the best possible treatment for her young daughter’s rare medical condition. 

But half a dozen years later, her daughter Rylie, now 13, has been instrumental in the passage of three medical cannabis laws in Delaware, one of which is named for her.

Rylie’s parents first grew concerned when, as a seven-year-old, she began exhibiting unusual symptoms: first, what looked like a persistent cold, then a blocked nostril, then losing her teeth. After months of uncertainty, a CAT scan found an aggressive tumor attacking one side of Rylie’s face. Then, as she was being prepped for surgery and chemotherapy, a final bone biopsy came back negative. It wasn’t a malignant cancer, after all.

Forty-seven tests later, doctors concluded it was a very rare form of tumor, aggressive giant cell granuloma. Surgery and chemotherapy were still the treatment, so the Maedler family began a complementary treatment with cannabis. Janie had done some research on what her young daughter was facing and had decided cannabis could be effective in fighting Rylie’s recurrent tumors.

A year later, in 2014, Rylie was speaking at Rotary Clubs and other groups, raising funds and support to start a nonprofit, Rylie’s Smile Foundation, for children suffering from rare diseases. Then she and her mother turned their attention to the Delaware legislature, campaigning for a medical cannabis law that would allow access for other children such as Rylie, who had now also developed a seizure disorder that cannabis extracts helped control, along with her tumors. After months of testifying at hearings and speaking to the media, Delaware passed “Rylie’s Law” in 2015, establishing legal access to medical cannabis on the recommendation of a pediatrician.

Rylie and her family soon discovered that there is more to safe access than passing a law. In Delaware, cannabis could not be brought on school grounds, so Rylie had to leave school each day to administer her medicine, crossing a bridge to meet her mother.

Then, there was the bomb threat.

“I didn’t know why she wasn’t at our regular spot and the regular time,” Janie says. “I had no way to know, and she had no way to tell me, that the school had moved all the students to a secure location.”

Rylie didn’t get her medicine that day, and had a seizure.

Delaware lawmakers were soon opening handwritten letters from Rylie explaining that she needed one more thing from them. She could make it across that bridge in a Nor’easter, even if the rain and lightning made it scary. But what about other kids? Kids with oxygen tanks or mobility problems? How were they going to get their medicine?

By the time Rylie was done lobbying, the state board of education and the state nurses association both supported the change unanimously, and in 2016 the legislature passed the bill. Rylie asked the then-governor, Jack Markell, to sign the bill at her school so the other kids could see why she’d missed so much school going to the capital. He obliged.

“Sometimes people will call me a “poster child,” Rylie says. “This bothers me so much because I work my butt off. My mom is an outspoken advocate, and I begged her to let me do this. When I was 11years old, we made some agreements that I had to take care of my health and grades first, but she and my dad would let me.”

In 2017, Janie and Rylie began trying to figure out how to add other conditions after hearing the story of a boy named Jonathan. Jonathan’s autism was not a qualifying condition in Delaware, but because it was severe enough to cause wasting, his parents were able to qualify him under that. The bill to go from a legislative process to a petition process for adding conditions stalled after passing out of committee in the summer of 2017. At the end of June, with two weeks left in the session, Janie started spending late nights at the capitol rallying legislators they’d built relationships with. At midnight on the last night of the session, “Jonathan’s Law” passed.

Rylie’s nonprofit, Rylie’s Smile Foundation, filed a petition to add autism under the new law. At first officials balked at a blanket autism diagnosis, insisting on limiting it to “severe autism” or “autism with aggression.” Janie helped organize mothers of children with autism to come to the hearing and read off their children’s symptoms to lawmakers.

“I told them, ‘If you pass it this way, I will file 20 more petitions for each type of autism,” Janie says.

In December 2017, Delaware added “severe debilitating autism.”

Last year, Rylie went back to Legislative Hall with a list of five things to work on, including opening qualifying conditions to what a doctor determines, allowing all licensed physicians to recommend for children, and requiring continuing medical education in cannabis to recommend. A competing bill made the politics challenging, but Rylie and Janie persist, even as Rylie’s advocacy goes global.

She appeared in Australia and Israel last year, will be in Hong Kong for a technology conference on market disruptors in October, and gave the keynote address at the Cannabis Science Conference East this spring.

“I have so much that I want to do and say.  I felt like I could not be heard if I did not do this,” Rylie says. “There is a stigma in our own community that the pediatric patients are not heard, yet we are the ones who change so many laws.” 

Meanwhile, the Maedlers have launched a pilot hemp project at their family farm in Virginia. If it goes well, they plan to have as much as 40 acres under hemp cultivation soon, with the hope of being able to provide other patients in need with free medicine

This profile was originally published in the May 2019 ASA Activist Newsletter