11-year-old cannabis medicine pioneer healthy and happy

The only thing 11-year-old Rylie Maedler is afraid of these days is middle school.

You’d never know that, when she was 7, a tumor decimating the bones in her face caused doctors to predict the worst. But Rylie, with the help of her tenacious parents and a once-taboo drug, would surprise them. She’s not only living and thriving, but making a difference for other kids like her.

Rylie and her Rehoboth Beach family have made such a positive impact that they count Sen. Ernie Lopez (R-Lewes) as one of their fans.

“I think [the Maedlers] are courageous, amazing people,” he said. “They’re emblematic of a lot of young families in this area who would do anything for their kids.”

Central giant cell granuloma

Rylie and her twin brother Gavin were more than 10 weeks premature when they were born Dec. 7, 2005.

“Rylie’s always kind of had a healing vibe about her,” said 44-year-old Janie Maedler, their mother. “She was ready to leave the NICU when she was half her brother’s size. His brain just couldn’t keep his temperature regulated, so they put them in the same incubator and his temperature started regulating. I had to keep them in the same bassinet when I brought them home.”

Rylie led a normal life as a typical, bubbly little girl for some time. It was when she was 7 that her life changed.

“I started noticing some things about her facial features that summer,” Janie said. “Her teeth got extremely crooked, one eye started getting lower than the other. Sometimes the side of her face would be swollen.”

Janie thought Rylie might have a blocked tear duct, so she took her to see an allergist, but one day, it became apparent immediate action was necessary.

“This one morning, the amount of swelling and the lopsidedness of her face, it was shocking to me,” Janie said.

She and her husband, 49-year-old Sean Maedler, rushed Rylie to A.I. Dupont Hospital for Children in Wilmington, where doctors felt defects and holes in the bones in Rylie’s face. They immediately sent her for more definitive tests, which showed that a quarter of her face had been eaten away by an aggressive tumor.

The Maedlers were whisked off to oncology, where they were told Rylie likely had late-stage cancer. Doctors said they would do their best to treat her and “give her some time.”

“It was a big shocker, going from thinking it’s a blocked tear duct to, all of a sudden, you’re losing your kid,” Janie said.

The hospital began to prepare Rylie for the long road ahead, including inserting a port under her skin that would prevent them from having to poke her with a needle so often. While she was under anesthesia, they took another look at the tumor. This time, they weren’t so sure it was malignant; in fact, they weren’t really sure what they were dealing with at all.

Eventually, Rylie was diagnosed with central giant cell granuloma, an extremely rare condition.

“To be honest, I didn’t know what was wrong with me and I can’t remember when I found out,” Rylie said. “But half of my face was getting bigger and my eye was moving up. I think they told me, like, later, it would keep getting bigger and I could lose my hearing and vision. My mom told me once I could possibly, like, die, but it would take years to happen. I was really scared. I was crying and stuff.”

The cause of central giant cell granuloma is unknown.

“It mimics cancer so well, even though it’s not malignant, it’s still life threatening,” Janie explained. “The difference is mainly that it can continue spreading but it can’t jump to, say, her leg or an organ.”

So while the tumor would not kill Rylie, it would most likely continue to grow and require multiple surgeries and chemotherapy. She would often be in pain and probably disfigured. Rylie no longer had a death sentence, but the prognosis still wasn’t good.

A mother’s love

However, Janie had been doing her homework, researching her daughter’s symptoms online, and had come across a promising treatment.

“It was the furthest thing from my mind,” she said. “I grew up in a very religious home. I’ve never smoked or used cannabis, but it kept popping up. When they tell you that [your child may be fatally ill] … I mean, I would go to the moon and get a moon rock if it would help her.”

Another parent at the hospital put Janie in touch with a small group of mothers whose children were seriously ill and using cannabis oil –  some legally, some illegally –  with amazing results.

“There were too many reasons to do it and not enough reasons not to,” she said. “Just seeing Rylie put her head down, this inner depression when she’d always been so happy, I couldn’t not give everything in the world for her. I couldn’t leave a stone unturned.”

At the time, adults with a medical prescription could legally use cannabis oil in Delaware, but not children. So in December of 2013, the Maedlers started breaking the law to treat their daughter’s illness.

Surprising results

“With pediatric medical oil, you have to be more careful to avoid snake oil companies that will take advantage of you,” Janie said. “By the time you’re ready to give [cannabis oil] to your child, you’re in a desperate panic, you’ll buy anything.”

Fortunately, the support group Janie had become a part of was there to guide her through the process. Buying marijuana on the street, where there is no quality control, was not an option. Members known as “angels” would obtain cannabis oil at legal dispensaries in other states and ship it to families in places where the drug was not yet legal.

Janie started giving Rylie five milliliters of cannabis oil four times a day. Doctors performed surgery to debulk the tumor, but couldn’t quite reach it all, and the surgery had an unfortunate side effect –  seizures.

“I didn’t care what [my mom] was giving me as long as it helped, and it did,” Rylie said. “It really helped with pain and stuff. And without it I would be, like, having seizures all the time. I probably wouldn’t be able to go to school, or even… um… yeah….” Rylie giggled as she trailed off, brushing off an almost deadly illness in the way only a child can.

Typically, the next step in treatment would have been chemotherapy, but something amazing happened. Rylie’s tumor started shrinking.

“We went from needing chemo, plastic surgery and all new teeth and to be on a liquid diet for many months to putting her on cannabis,” Janie said. “Come to find out it shrunk [the tumor], maintained seizure control … and maintained her pain level. We never even had to touch narcotics. Her bones regenerated faster and better than anybody expected.”

Slowly but surely and miraculously, Rylie began to live a normal life again. Doctors consider her stable, but central giant cell granuloma is still so mysterious they aren’t sure how to classify stages of recovery. Next year, Rylie will have lived five years in which the tumor has not grown.

Giving back

As soon as the Maedlers started seeing some stability in Rylie’s scans and Rylie felt more at ease, she started talking about how unfair it was that none of the other kids could have “her medicine.” She also sympathized with the fearfulness children still in the hospital were feeling.

“She was remembering how miserable she was,” Janie said. “In some ways she just doesn’t ever want to feel that way again, but in other ways she has survivors’ guilt. She wanted to do something to help the kids that were still in the hospital take their minds off it.”

Rylie started going to speak to local organizations, like the Rotary, and asking them to donate to her cause. She quickly raised enough money for a lawyer and founded Rylie’s Smile, a 501(c)(3) nonprofit that advocates for medical cannabis and raises money to buy iPods for sick kids.

At the same time, the Maedlers went public with the success of Rylie’s cannabis oil treatment and started working with their state senator, Lopez, on a bill that would legalize it for children.

“I was just really proud to be a part of something, as an elected official, where they felt comfortable coming to me,” Lopez said. “That’s why you run for office, to help people. And to see that the actual legislation has … had a positive impact on her life is just tremendous.”

In 2015, a year and a half after the Maedlers started treating Rylie with cannabis oil, the General Assembly unanimously passed Senate Bill 90, or Rylie’s Law, allowing children to use medical cannabis to treat certain afflictions. Since then, the Maedlers have been instrumental in improving upon the law to allow children to have their cannabis oil in school, and are currently lobbying to have autism added as a qualifying condition.

On top of all that, Rylie started raising money to buy iPods for hospitalized children.

“My mom-mom gave me an iPod while I was in the hospital to help distract me from all the scary things,” she said. “And it really helped me calm down. So when I was all better and left the hospital I felt bad for the other kids. I wanted to give them iPods too.”

Rylie’s Smile has given away over 80 iPods to date, with which recipients from across the country can watch movies, listen to music and text and call family and friends.

“One of our recipients who was in [the hospital] for about a year was able to keep up with school through an app on the iPod,” Janie said. “And the kids really find relief in documenting their experience and sharing it with families and friends. I mean, that’s exactly what therapy is - talking it out and not holding it all in.”

Rylie’s Smile’s next fundraiser, Rylie’s Dog Days of Summer Run, is Monday, Sept. 4, in Lewes. Find out more at RacesToRun.com or RyliesSmileFoundation.org.

Future star

Despite charming both the House and the Senate in the Delaware General Assembly, Rylie has no political aspirations. She wants to be an actress or an author when she grows up. She likes Emma Watson and the recent Beauty and the Beast movie. She’s not sure who her favorite author is, but she thinks she wants to write and illustrate books.

However, after overcoming a potentially terminal illness, helping pass a new law and starting a nonprofit all in the first 10 years of her life, Rylie’s not all that concerned with long-term plans.

She has more pressing problems: “I’m just really nervous about starting middle school.”