Washington father John Barclay is fighting for young cannabis patients to receive their medication at school. He was inspired by his own daughter, River, who suffers from a rare disorder that he says is more effectively managed with CBD than any other medication they’ve tried. If Barclay is successful, Washington would join states like New Jersey and Colorado, both of which have adopted similar policies within the last two years.
River Barclay had her first seizure when she was just four years old on St. Patrick’s Day, 2014. Nearly three years and an unfathomable number of seizures later, River was finally diagnosed in November of 2017 with CLN2, one of several rare inherited disorders known by the umbrella term Batten disease. This degenerative condition first manifests in the form of seizures, as well as difficulty with coordination, language, and motor skills.
CLN2 is terminal; most affected children will not make it into their teens. At 8 years old, River is already in the final years of her short life. Heartbreakingly, Barclay describes how CLN2 takes away pieces of a child, bit by bit, over time.
“With CLN2, there’s no playbook,” Barclay said. “They say there’s an array of things that CLN2 children lose. If you think of the mind like a rainbow, there’s a whole spectrum of things. You could say the blue spectrum has 100 bars and the yellow has 100 bars and so on and so forth. Different shades that control different things. So, the blue might disappear and her sight might go. The green might go, so now she’s not swallowing anymore. More of the green might go, so she’s not protecting her airways and she’s having problems with her saliva. But you don’t know which is going to go.”
For the first few years of her life and before that first seizure, River developed normally, as is the case with CLN2 patients. Barclay recalls his daughter as “smart as heck,” a quick learner, and the owner of a “fun” and outgoing personality that drew others to her. She loved to play pranks on her dad, was a good listener, and made friends easily.
Yet by the end of kindergarten, she was struggling to remember how to complete common tasks. By first grade, Barclay said she had to be removed from class because she was suffering over 100 myoclonic seizures—short jerks in the body—each day.
Barclay said prescription medications often made the seizures or her general quality of life worse, but he did find some relief with CBD. River first started with a tincture: 10 drops, or 2 milligrams, a day.
“That first day, it was like a new canvas. You could instantly see it work,” he said, noting she went from near constant seizures to perhaps six a day. “For three months, we were just using [the CBD tincture], and then [the seizures] started to come back. So we gave her a little more.”
River now takes 260 milligrams a day, in conjunction with Diazepam and anti-epileptic drug Keppra. Barclay says skipping the CBD is not an option.
“She would go sideways. She would have tonic-clonic seizures all day. It would take a radical pharmaceutical rescue to get her to stop,” he said.
Barclay isn’t alone. Fahad Afeef’s 10-year-old son, Ibrahim, also has Batten disease. He told the Houston Chronicle that his son’s first seizure came at age five, and that the cocktail of medications he was initially put on turned him into a “zombie.” Afeef ultimately moved his family from Texas to Colorado in 2013 so he could try CBD. Afeef said his son’s seizures are now sometimes months apart.
For River, however, another barrier emerged as she entered the second grade: though River has a medical cannabis card, her school would not allow cannabis—whichremains federally illegal—on campus. Barclay would take River to school in the morning, then pick her up at lunch and give her CBD oil in the form of drops on a cookie. Barclay told KOMO News that it was too disruptive to try to bring her back to school again, so he’d keep her home the rest of the day.
“We want to do all we can to help, but we also need to work within the confines of the law in our state,” Aberdeen School District Superintendent Tom Opstad said in January of 2017.
Barclay wanted to change those laws, so he reached out to a long-time friend, Washington state Representative Brian Blake (D-Aberdeen). Blake became a co-sponsor of House Bill 1060, otherwise known as “Ducky’s Bill.” This particular bill would have allowed Washington parents or authorized caregivers to administer medical cannabis to their children on school grounds.
“Ducky,” Barclay explained, was River’s nickname, inspired by a dream her mother had while pregnant with River. River is not a fan of the cutesy nickname, and Barclay used that to his advantage.
“When she was having her first seizures, they were really making her mad; she didn’t understand what was going on and everything was confusing,” he said. “During the postictal state [an altered state of consciousness following an epileptic seizure] she would just lay there. I would say, ‘Are you okay, are you there?’ and I kind of got the feeling one time like she was ignoring me. So I looked at her and I said, ‘Ducky, are you there?’ And she looked up at me with the angriest eyes and said, ‘I’m not a duck, Dad, I’m a big girl’ and she got up on the couch.”
Thus, “Ducky” became a way for Barclay to tell if his daughter was “back,” as he calls it.
Ducky’s Bill did not make it through the Senate, but Blake intends to reintroduce it again in January. Blake told High Times the bill will be assigned a new number, and he’ll also try to encourage a companion bill in the Senate.
“I don’t care whose bill it is,” he said. “I think it’s a reasonable policy and we just need to get it done.”
Blake says there are about 60 to 100 children in Washington on the medical marijuana registry who could potentially benefit from the bill.
“I’m confident that this therapy works for some children and should be available and shouldn’t be a barrier for them in getting access to professional educators,” Blake said. “[Keeping] them engaged in a normal life and in school with their friends and classmates as much as possible just makes sense to me. Folks, in many ways, want to make it about marijuana, but for me, it’s about children.”
Barclay says Ducky’s Bill is based on a similar bill from New Jersey, championed by attorney Roger Barbour and his wife, Lora. The couple’s teen daughter, Genny, has both epilepsy and autism. She takes cannabis oil four times daily, but was not allowed to have it on campus. Roger Barbour sued his daughter’s school, ultimately winning a settlement of $45,000. In 2016, it became New Jersey law that school boards must allow parents or caregivers to have edible cannabis on campus and on school buses, thus making New Jersey the first U.S. state to allow cannabis on school property. Barbour was still working on further expanding that law when he suddenly passed in September of 2016 due to a heart attack at 51.
In Colorado, there’s Jack’s Law, which, as of 2016, similarly requires schools to allow parents to administer medical cannabis to their children on campus. Jack’s namesake, Jack Splitt, was a 15-year-old boy who suffered from cerebral palsy and epilepsy. Splitt died in August of 2016.
Just this month, Illinois Gov. Bruce Rauner signed off on Ashley’s Law, a bill inspired by 12-year-old Ashley Surin, who takes cannabis for seizures related to leukemia.
Even if Washington adopts Ducky’s Bill, it won’t impact River, whose condition has deteriorated to the point where schooling would be impossible. She no longer takes CBD oil as drops on a cookie, but through a G-tube and, according to her father, is now 95 percent blind. To keep up with the rising costs of her increased CBD dosages, Barclay has begun growing his own plants. He also has an active GoFundMe to help pay for River’s medical bills and hospice care. Still, Barclay remains committed to Ducky’s Bill for his daughter’s legacy and the sake of children like her.
“My greatest hope right now is to get cannabis and CBD out there, more mainstream, along with [awareness for] CLN2 and Batten,” he said. “I don’t want to see other children suffer.”