Little Venus was suffering constant seizures until her mother ordered the banned substance online out of desperation.
(Top image, Venus. All images supplied.)
By the time Ngaio gave her 18-month-old baby her first hit of cannabis oil, she felt she had nothing to lose. Seizures were gripping baby Venus every other day, becoming more aggressive each time. "You just feel so powerless" Ngaio tells VICE. "Nessie would double over like she'd been punched in the stomach. She was terrified. You never want to see your child look at you like that".
It had been a year since Ngaio and her partner Zane first admitted to themselves there could be something wrong with their beautiful daughter. Venus was the ultimate blessing after a painful few years—their last baby, a boy, had died during birth.
But at six months old their Venus wasn't hitting those all important milestones; rolling over, crawling, making eye contact. Ngaio told herself maybe it was just her happy baby's chubby thighs getting in the way.
A few months later, Zane and Ngaio could no longer explain away what they were seeing. Nessie's shoulder scrunches—which her parents thought were weird, but not necessarily worrying—had transformed in to full body contortions. Without warning, Nessie would lurch forward, gasping for breath, her eyes rolling, powerless against the neurological forces at play.
After weeks spent in white-walled waiting rooms, the family were finally given a diagnosis: Infantile Seizures. It's a rare form of epilepsy, and even more unusual given what was causing them—a condition known as phenylketonuria. It means Venus doesn't have the enzymes to break down phenylalanine, an animo acid found in almost every form of protein. By the time it was diagnosed, the acid had built up in her body and become neurotoxic.
Doctors prescribed a heavily restricted diet, free of almost every type of protein. But it was the steroids, meant to stop the seizures, which eventually turned the family to cannabis.
Venus was to be given liquid steroids orally, four times a day. But Venus refused the medication, and would have to be forced down, the syringe shoved to the back of her throat to keep her mouth open. Ngaio remembers it well. "Pinning down your baby, while she screams, cries, kicks and fights with everything she has...I would ask myself, how can this be the right thing to do?"
A few weeks in to the six week course of steroids, Venus stopped opening her mouth for food or water. Ngaio thinks the steroid syringe was to blame. It got so bad, Ngaio asked doctors to give Venus a nasal tube. Later she was given a feeding tube straight in to her stomach.
Despondent and depressed, Ngaio was in hospital, mulling over her daughters future, when a stranger handed her a magazine, pointing her to page five. In it, Ngaio read the story of Charlotte Figi, a American girl with Dravet syndrome—another rare form of epilepsy. Charlotte's condition couldn't be treated with medication, and at its worst was giving her 300 seizures a day. When Charlotte was five years old her parents turned to cannabinol (CBD) oil, and her seizures all but stopped.
CBD is one of more than a hundred active compounds found in cannabis. It's the second major cannabinoid in the plant, and has no psychoactive properties. It's often overshadowed in the cannabis debate by tetrahydrocannabinol or THC—the compound in cannabis which gives users a high. When it comes to hemp however, the roles are reversed, and CBD is the major compound. So the oil extracted from hemp—CBD oil—has no known high.
CBD oil is legal in 40 countries, but New Zealand is not one of them. A small number of patients can apply to the Ministry of Health for access, but few are successful. Nelson lawyer Sue Grey has launched a challenge in the High Court to free up access to the oil, given the government's own scientific research institute thinks CBD can't be covered under the Misuse of Drugs Act. It's the Ministry of Health that disagrees.
Not content to sit and wait for government departments to battle it out, Ngaio did her own research, and decided to give CBD was their best bet. She found a site willing to send the oil to New Zealand, paid $120 for one gram, and waited. By the time the oil arrived, Venus had been off the steroids for six weeks, the seizures were back, and her family decided it was now or never.
Ngaio says giving her baby this "medication" was an entirely different experience. "I made her laugh, and then swoop—just a quick swipe of oil rubbed on to her tongue or gums". Ngaio gave Venus a small amount—a dab on the tip of her finger—and despite the oil's strong taste, Nessie apparently didn't mind. "That was the first indication that this was the right medicine for my girl" Ngaio says. "It was smooth sailing from then on."
Venus was given about 0.01 grams a day according to her Mum, although she admits the dosage is more of a guess. Day after day, the family waited for a seizure, but none came. After six weeks of CBD oil, Venus appeared cured. She has had no more seizures since taking the oil, not even one.
Doctors put Venus' apparently miraculous cure down to placebo, arguing that Ngaio and Zane could no longer see their baby's spasms because they were so convinced the CBD oil would work.
Ngaio calls that a "crock of shit".
Now three and a half, Venus is still afraid of anyone in a white coat, or with a stethoscope. Ngaio feels responsible for a lot of what her daughter went through, before they started the CBD. "I tried to defend her rights, but I failed" she says. "Her and I were both traumatised from the steroids, the hospital visits, the doctors".
Due to her condition, and the seizures she had as a baby, Venus is still behind in a lot of ways. She doesn't talk a lot, and so finds it hard to communicate. But her Mum is convinced Venus will get there. "She's one cheeky little lady. We know she's so clever. Her condition, and intensely restrictive diet is for life. But thanks to CBD oil, the seizures are not."
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