Witnessing children with life-threatening diagnoses survive as a result of cannabis therapy has created an empathetic wave and propelled cannabis legalization. We’ve watched as the hearts of politicians have been tugged to give a few more families hope that their child will live to see another day.
Today, that narrative has evolved. No longer are only the desperate parents begging for help or uprooting their lives so their children can have safe and legal access to cannabis. Today it’s the children demanding the right to live.
Alexis + Jagger
At the age of 7, Alexis Bortell was diagnosed with intractable epilepsy. After two years of doctor and ER visits, tests, and pill after pill—all with long lists of negative side effects—her family gave up on pharmaceutical options and turned to cannabis.
Cannabis provided Alexis immediate relief by reducing the severity of her seizures. But the CBD-only cannabis extract that she could legally get in her home state of Texas did not stop them. Like many other patients, Alexis has a form of epilepsy that responds best to whole-plant medicinal cannabis. Because of this, her parents felt they had no other option than to move from Texas to Colorado in 2014 to become medical marijuana refugees. Alexis became a medical cannabis patient in Colorado and has been seizure-free since.
The Bortell family made the choice to be public about their experience, even going so far as to be one of the plaintiffs in a lawsuit against the federal government over the Schedule I status of cannabis.
The list of plaintiffs also includes Jagger Cotte, 9, a Georgia boy suffering from the neurological disorder Leigh’s syndrome. Jagger has used medical cannabis to lengthen his life and control his otherwise excruciating pain.
Attorney Lauren Ruddick works at Hiller PC, the law firm representing Alexis, Jagger, and the other plaintiffs in the lawsuit. Having served on the case since it began, Ruddick explains that the panel of appeals court judges recognized that cannabis has, in fact, saved the lives of Alexis and Jagger.
“It is absurd that anyone, especially children, are deprived of life-changing or life-saving medication—an unfortunate and unforeseen byproduct of the racist policies underlying the initial enactment of the Controlled Substances Act over 40 years ago,” says Ruddick. “We will never know if our judges embraced Alexis’ and Jagger’s stories, but the irrationality of cannabis being classified as a Schedule I drug cannot be more evident when viewed through the eyes of children.”
The lawsuit was brought all the way to the Supreme Court
Sophie
Tracy Ryan founded the nonprofit Saving Sophie after her daughter Sophie, born in 2012, was diagnosed with a low-grade optic pathway glioma brain tumor before her first birthday.
“We believe that science is the key in bringing medical cannabis to the masses,” Ryan says. “Research allows us to have the proof we need so that we can have meaningful conversations with the politicians who structure our nation’s laws.”
Ryan chose to use cannabis to help Sophie get through her chemotherapy, and after 13 months of chemo and high doses of cannabis oil, the size of Sophie’s brain tumor reduced by 85% to 90%, and a massive cyst that had also formed was reduced by about 90%. To share Sophie’s story and help other children, Ryan later founded CannaKids and began doing public speaking and meeting with politicians.
“There is so much misinformation that has been spread for decades. So many people have been brainwashed that this plant is somehow extremely dangerous for us,” Ryan says. “By using Sophie’s story, the stories of CannaKids’ patients, and the research that we’re doing, it allows us to more easily open hearts and minds so we can end the stigma once and for all.”
Coltyn
In his first television interview about medicinal cannabis us, Coltyn Turner didn’t mince words.
“I’d rather be illegally alive than legally dead,” says Coltyn, who at the age of 14 became the first pediatric cannabis patient for Crohn’s disease—only after major sacrifices by his entire family.
His mother, Wendy, says: “Coltyn needed access, and I really didn’t want to go to jail because of it. We’re a fighting family and are definitely about fairness and justice.”
When the Turners learned that Illinois was going to work on passing a law for medical cannabis, they also heard about a policy in Colorado that was going to affect children. The Turner family began advocating to policymakers in both Colorado and Illinois.
“As we were quickly learning about the lies and crazy laws surrounding a medicine that saved our son’s life, we were also realizing that we needed to speak up about all of it,” Wendy says. “We jumped in without even testing the waters. A lot of the policy being made was surrounding the seizure kids and CBD. Coltyn needs THC, and we didn’t want him and kids like him left out of the laws.”
What began as a website to update family has become a destination for other parents to learn about Turner’s story.
Through the process of lobbying for the rights of patients, Wendy noticed it was mainly parents doing the advocacy. The other kids were too young or couldn’t express their thoughts and feelings because of their illnesses. Wendy still gets emotional when recalling how one day Coltyn told her, “I need to be their voice. I can talk and stand up for all of us sick kids.”
“I recently went to D.C. to meet with Congressman Eric Swalwell and five other U.S. Congressmen so I could beg for help in at least de-scheduling for research. It was extremely successful, and we now have a letter in to the (attorney general) with 27 bipartisan signatures with hopes of taking the next steps toward a bill.”
Photos courtesy of Sebastien Cotte, Tracy Ryan and Wendy Turner.
