- Jai in Brisbane, sitting among the MCUA's 'Leaves of Change'
In what politicians in Australia would have you believe was an historic vote, the Australian federal parliament 'legalised' Cannabis for medical and scientific purposes. Health Minister Ley announced in February, 2016: “This is an historic day for Australia and many advocates who have fought long and hard to challenge the stigma around 'medicinal cannabis products' so genuine patients are no longer treated as criminal”. Jai was seen by one of the leading neurologists in Australia, Professor Ingrid Scheffer. Tests uncovered that Jai had a rare combination of three different types of epilepsy: Landau Kleffner Syndrome, Continuous Spike Wave Syndrome, Pseudo Lennox Syndrome, plus autism. Violent physical seizures and unseen seizures were almost constantly damaging his young brain.
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Michelle remembers clearly the moment her life changed forever. It was the 16th of January, 2010; a sweltering sunny afternoon in Melbourne at a family barbecue. Her bubbly, chatty, youngest son Jai, then aged 5, stood chatting to his cousins. Then, without warning, his legs gave way and he collapsed. “For 18 long minutes, he convulsed on the ground”, recalls Michelle. “We called an ambulance. Jai was wired up for EEG tests, given blood tests, brain scans. His condition was pretty unusual. They even spoke with neurologists in the United States”.
“As well as the physical fits, Jai was suffering up to 500 sub-clinical seizures a day. Every three to five seconds his brain was misfiring”, recalls Michelle. “Sometimes he’d drop to the floor, other times he’d get that blank look we came to recognise, or we couldn’t even tell”. Jai’s life was never the same again. He was given a cocktail of 35 tablets. His parents Michelle and Andrew installed cameras, microphones, alarms all over the house. They never left their youngest son alone for a minute.
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Sadly, it did not last. “Then one horrific night in November 2014, Jai’s little body shook with six hours of seizures. We didn’t know what to do. I lay next to him in bed, terrified of what would happen next. When he woke up, Jai had no idea who any of us were. He was wetting himself, choking on food. Doctors said there was nothing more they could offer. We brought Jai back home”. Michelle had created a Facebook page for sharing information with other families affected by epilepsy. Many reported great results using Cannabis Oil (CO). “I’d spoken to hundreds of families around the world. Many had been investigated by the police and had children’s services called in for treating children with Cannabis. But we had no other hope”, insists Michelle. “The more I read, I thought the side effects couldn’t be worse than the drugs we’d weaned Jai off”. The family decided to give Cannabis extracts are a try.
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On the morning of 14 December, 2014, I squirted a syringe with one millilitre of whole plant THCa liquid into his little mouth. Jai looked up at me, it was the first time he made eye-contact with me in a long time. A couple of hours later, I gave him another micro-dose. I waited and watched. And that evening, he looked up at me again. And then he asked, ‘Mum can I go outside?’ I cried”. Was it real? It was impossible not to have doubts. “Did I want him to get better so much that I was imagining things?” Michelle explains, describing her shock. “I hooked his little arm under mine and we walked out and sat on the grass. ‘I’m hungry’, said Jai. The transformation was miraculous. Within 48 hours, I said to my husband, ‘We’ve got Jai back!’”
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“It's a positive step forward as it means the government has recognised Cannabis as a 'medicinal product'”, said Michelle. “But it's still unlikely to make a difference for families like mine. Each state of Australia needs to adopt the federal legislation changes. People are assuming they can now go to their doctor and grab a script, but there is no supply at present. The changes mean that anyone with a chronic condition should be able to work with their specialists and eventually will have access to pharmaceutical-grade Cannabis, but unless you opt for costly pharmaceutical-grade Cannabis products, families like mine remain criminals”. Michelle says that anecdotally she has heard of mixed results for people with epilepsy in trials of Cannabis-based pharmaceutical products.
“I won't risk Jai on pharmaceutical Cannabis-based medicines when he's seizure-free on the whole plant Cannabis tincture he’s on”, she adds. “It is unclear how the legislation will be implemented, but likely that growers will require a license to grow large cultivations and will have to submit applications. Most compassionate growers here all have criminal convictions. So who ends up being the growers? What experience will they have? Will they be rich businesses who want to make money from the sick and dying with no expertise?” These questions will likely be answered soon.
“It’s a start”, she concludes. “But we still have a long way to go. Still, it’s not that complicated. Jai is 11 years old and gets it. He calls Cannabis ‘my medicine’”.
On 25th of October, 2015, Jai speaks about his wonderful transformation in his own words.
Adapted from, Cannabis Saved My Son's Life