Jai, an epilepsy sufferer, during an EEG
As the US edges closer toward marijuana decriminalization, Australia is resisting hard. Last week the country’s largest producer of medicinal cannabis, Tony Bower, was sentenced to a year’s jail, pending appeal. Bower is the man behind Mullaways Cannabinoid Tincture, which is an orally administered oil, given free of charge to around 400 clients, most of whom are epileptic children. Another supplier, the proprietor for The Don Medical Cannabis, is also appearing in court September 8. In summary, it’s a bad time for Australian prohibition reformists, and an even worse time for epileptic children.
Two questions emerge here: Is medicinal cannabis actually medicinal? And if so, will removing it adversely affect sick children? To find out, we spoke to some of the parents around the country who use the Mullaway tincture. Here’s what they said.
Melinda with her son Mitchell
VICE: So how did this all start?
Melinda: It started when Mitchell was 19 months old. He had his first fit and was diagnosed with Lennox-Gastaut syndrome, which is a rare form of epilepsy. We tried all sorts of medications to stop the seizures – Epilim, Keppra, and clobazam – but the side effects were nearly as bad as the seizures. Headaches, excess drooling, unsteady feet, loss of appetite, shrinking gums, soft bones. If Mitchell fell over he’d break every bone in his body. That’s what ten years of Epilim does. Also, instead of getting better, he was getting worse. He was having 20 seizures on a bad day, usually for three to five minutes each. I just couldn’t watch him suffer like that.
How did you arrive at marijuana?
Well, I was getting desperate, so I started looking for answers online. I’d read about marijuana, but I’d never smoked and didn’t know anything about it. It took me a year to decide. Finally I thought, Fine, if I have to go that way, I will. I got the marijuana tincture from Tony, but I only gave him a tiny bit because I was nervous; I just didn’t think it would work.
It sounds silly, but I noticed straightaway. Mitchell had always been unsteady on his feet from the drugs, but from that one dose I saw a difference in how he walked. So we kept on trying it, and now he only has two or three seizures a day, and only for a few seconds. If you didn’t know him, you wouldn’t know they were seizures.
What will you do if Tony goes to jail?
I won’t stop using this. They can arrest who they want, but I will do whatever it takes. To anyone who wants to stop me, I say let’s swap kids. Give me the healthy kid who goes to the movies, goes swimming, goes to Dreamworld – the kid who grows up and gets married. That’s all I want, and I’ll do whatever it takes.
Cheri with her son Sean and daughter Tara
So you’ve got two children with epilepsy?
Cheri: Yes, Tara was diagnosed with epilepsy when she was six weeks old, but Sean was nine. We’d always thought there was something not quite right about him. He has autism, and his teachers just thought he was daydreaming, but then sometimes I’d find that he’d fallen out of bed during the night. I thought, What’s going on here? Then, finally, he had a seizure at school and we knew. He had epilepsy.
But it was Tara’s condition that made you consider cannabis?
Yeah, she’d been getting worse for a long time. Finally in 2012, after she’d been resuscitated eight times, we were told the end was coming. She’d probably have a final seizure in the next 24 months, and that would be it. That’s when we became desperate. We’d known about marijuana for a while, but I’d always said no. Then a friend of ours, whose daughter died during a seizure, asked us, "What do you have to lose?"
You don’t look like it, but I’ll ask anyway – are you are a hippie?
Me? Absolutely not. I’ve just finished a Christian course to work as a pastor, so that gives you an idea of how I feel about drugs. I’m not a hippie, or even a risk-taking person, and neither is my husband. In fact, when I received the tincture, I kept thinking that someone would show up at the door and take away my kids. But then I thought, What are the police going to do? My daughter needs $1,000 worth of medical attention every month. If they take her away, they’ll have to buy all that themselves.
What have your church friends said about this?
Everyone has been incredibly supportive. Although I’ve received angry calls from people outside of church, all who’ve had a drug-related death in their own family. I just tell them that Tara is now 17 months seizure-free, and it’s been 14 months for Sean. Down from thousands a year.
So what will you do if your suppliers are in jail?
I’m not sure. I know I’m prepared to break the law for my children, but I don’t want to lose my working-with-children certificate. It’s unfair that I have to choose.
Michelle and Andrew with their five children. Jai, in the chair, has epilepsy.
Hi, Michelle. Tell me, how you feel about drugs?
I’ve never touched recreational drugs. My husband is in the defense force, and I have a law degree, so we’ve never broken the law. We’re a family of seven, and we’ve always put our foot down with drugs. But these aren’t recreational; they’re medical.
How do you see that distinction?
I see it because Mullaways Medical Cannabinoid tincture has been tested by the NSW Health Department as a placebo dose of THC and THCA. Meaning it does not show up on testing. You can’t get stoned on a placebo dose. And then there’s the fact that it works as a medication. Our son Jai suffers from three different forms of epilepsy, and two years ago he’d got to the point where he was a zombie on the couch, wetting himself, completely incapacitated, and we knew we’d be soon burying him. An EEG was performed here in Brisbane – it’s basically a brain scan with lots of little electrodes attached to the head – and it showed a 92 percent seizure activity. You risk death at 100, so we knew we didn't have long. We then decided for a four-week period to give Jai hemp seeds.
Why hemp seeds?
We thought about the tincture, but it’s illegal, so we ended up getting the seeds. They’re legal for making into soaps; they just have a sticker warning against eating them. Australia and New Zealand are the only countries where it’s illegal to eat hemp seeds. Anyway, we gave Jai the hemp seeds for four weeks, and then he had another EEG. He was down to 85 percent, which is the first time the seizures had ever gone down.
But he’s off the seeds now?
He’s off the hemp seeds now because he’s in remission. Epilepsy comes in cycles, and we just have to hope that next time tincture will have been legalised.
_Follow Julian on Twitter. _
More stories about weed: