“It was the thought of losing my daughter without turning over every rock imaginable is what led me to cannabis,” says Janie Maedler, a mother, educator and cannabis advocate.
In October of 2013, life forever changed for the Maedler family when 7-year-old Rylie was diagnosed with Aggressive Giant Cell Granuloma — a disfiguring bone tumor that mimics cancer. Not only was the tumor eating away at her facial bone structure, it was causing immense pain and triggering seizures. As a result, doctors were eager to get her into surgery.
Though Rylie’s parents were stunned by the development, they went along with the hospital’s recommendations and dove into research of their own. Shortly after meeting with a group of mothers who also had sick children, Rylie’s mom, Janie, learned that some families were using components of the cannabis plant — specifically, THC, CBD, and THCA — to heal their children. At the time, THC and THCA were illegal for medicinal purposes in the state of Delaware.
After extensive research, the Maedler family learned that components of cannabis — primarily cannabidiol (or CBD oil) — have been proven in dozens of studies to benefit a range of conditions. Because there are over 100 peer-reviewed studies proving CBD oil “cures” cancer and 0 people have died from using it in the thousands of years it has been available, Rylie’s parents decided to introduce it as a therapy.
One month to the day after Rylie’s surgery, the 7-year-old’s parents began giving her cannabis oil in secret. Said Janie,
“When I went into this, having all this knowledge about what cannabis could do, it was […] a no-brainer to me.” Before long, Rylie noted a reduction in pain and inflammation, and tumor shrinkage was evident.
Because cannabis oil was illegal, the doctors didn’t know about the supplementation. However, they repeatedly commented on Rylie’s quick facial regeneration over the months. “There were a lot of questions — even when we went to John Hopkins,” said Janie. “They said, ‘This is very hard to believe that the child I am reading about in these records is that child sitting in front of me.’”
One year later, the young girl’s parents finally explained the “magic” medicine that had been helping her get better. As a third-grader, Rylie didn’t understand why the other children couldn’t have her life-saving tincture. However, she kept an optimistic spirit and, at the age of 9, founded the nonprofit Rylie’s Smile Foundation. The 501(c)3 gives free iPods to sick children. In the interview below, Rylie says that over 80 iPods have been given to other kids to help “make them brave.”
When it became clear that cannabis oil was having a positive impact on Rylie’s recovery, Janie decided to enter the realm of politics to ensure others could have access to the life-saving medicine. She single-handedly fought for Delaware to have a Pediatric Medical Marijuana law which was later passed and named Rylie’s Law. Janie then went on to fight for Delaware’s Pediatric Medical card holders to be allowed their cannabis oil on school property. Rylie’s Law and SB181 — the “amendment” to Rylie’s Law — were both passed by unanimous votes through all Health Committees, the Senate, and the House.
Now that Rylie is legally allowed to continue taking cannabis oil — and on school grounds, no less, she and her family continue to advocate for the use of marijuana as a medicine. At present, the Maedlers are pushing for autism to be added to the list of afflictions permissible to be treated with the natural herb.
According to Janie, Rylie is one of five children worldwide to have developed the incredibly rare tumor that mimics cancer. And, she is the only one who has not shown signs of regression. The family credits this to cannabis oil, which is why they seek for the herb to be decriminalized nationwide.
Shortly after Rylie’s diagnosis, the Maedlers partnered with Original Nectar to create a strain specifically for the young girl. Barry Herzberg, the founder and co-owner of the California-based company, said via email: “I was asked if I would be willing to help Janie with language and expertise regarding extraction for assistance in changing/writing local law. I agreed and we became friends after many long conversations. I also ultimately spoke with their local permitted extractors to help increase the quality of the product they were manufacturing.”
Regarding the specialized medicine for Rylie, Herzberg said: “Rylie’s exact formula is a result of tireless work by her mom. Conventional cannabis (CBD & THC) products were used, but attention to purity & quality, as well as dosing qty &
“Rylie’s exact formula is a result of tireless work by her mom. Conventional cannabis (CBD & THC) products were used, but attention to purity & quality, as well as dosing qty & intervals were major factors that Janie devised through constant research combined with trial and error.”
The hope for cannabis to be decriminalized extends beyond the Maedlers’ and even Original Nectar’s personal interests. All who are involved understand the grander implications of their actions. “Original Nectar and Rylie’s Smile Foundation have joined forces and brought together a truly world-class team of Scientists, extractors and cannabis experts,” said Herzberg. “We have only one goal really – we want to increase the quality of life, period.”
He added, “Cannabis isn’t a cure all, but it can very often safely make a suffering person feel better. Sounds simple – but it’s bottom line life stuff. Suffering is awful and we can help. Whether it offers only hope, or cures, or comfort – we’re one the many that will make sure we do whatever we can to get it out there.”