Like most four-year-old boys, Edward Thomas is a wee chatterbox. With each waking moment, he's ready to share the interesting musings of his day with mum Katy, from his favourite toy car to the feel of the new shoes on his feet.
And who can blame the word-a-minute youngster? He's making up for lost time. Until May last year, Edward, who suffers from global development delay (GDD) and intractable epilepsy, only knew one word and struggled with the milestones his peers seemed to hop and skip through.
"He doesn't shut up now," laughs proud mum Katy.
"And it's completely changed our relationship. He can communicate with me and I can communicate with him. You don't realise how important that is until you finally get it."
But it isn't just an influx of words that's different for Eddy, as he's lovingly known by his family. In the past year, he's gone from having 25 epileptic fits a day to just one a week, at most.
The miracle cure? Medical marijuana, officially known as cannabinoid (CBD) oil, which Katy blends into jelly mix and pours into gummy bear moulds. Eddy now looks forward to "treat time" every couple of hours.
"He's totally transformed," says Katy, a social media strategist and model. "He's a completely different boy and I am able to be a completely different mother. For a long time, we were in survival mode. We were just coping."
Katy, 34, admits that from the very start, it hasn't been easy. Edward was born five weeks prematurely in 2014 at Bangkok Hospital Samui on the Thai island of Koh Samui, where she and Eddy's dad were living at the time.
"We were in two different hospitals for two weeks, so I didn't even get to meet my son," she recalls of the traumatic birth. "All I wanted to do was come back to New Zealand, but it took two years for Eddy to be well enough to travel. I just felt so trapped."
Finally, in August 2016, Katy packed her and Eddy's bags, ended her crumbling five-year marriage and jetted back to Auckland, where her relieved parents Sandra and George live. But it was only the start of a new battle.
"Just a few months in, Eddy was in daycare and had a seizure," says Katy. "It was a scary call to receive. He'd had medical issues from the start. Just small things, a lot of sickness. But this was different."
The first seizure seemed to open the floodgates, as Katy puts it, and with each passing day, the fits that gripped Eddy doubled, then tripled. Before the mum-of-one knew it, she was watching her son convulse every few hours.
"You can't function properly when this is happening to your child," tells Katy.
"You can't sleep properly because you are wondering when your son is having seizures that night, rather than if. What if his tongue is blocking his airways? What if he falls, lands on something and hurts himself?"
The drugs prescribed by doctors simply weren't working. If anything, Katy believed they were making her son worse – with severe side effects like extreme vomiting and diarrhoea.
In May last year, after Eddy had suffered a string of severe and frightening hour-long seizures, Katy decided that she would look at alternatives. The first thing she did was change his diet to purely organic and whole foods, then she started to research CBD oil.
"My friend, a documentary maker, had been bombarding me with studies about medical marijuana for a while," recalls the devoted parent. "Every time I would shoot him down, saying I didn't want to make my child high – he had enough problems as it was!"
THC is the chemical property in marijuana that gives the high, but it's non-existent in the strain of plant that is used for medical marijuana, which is instead packed with a different property called CBD.
"After just one day of using the CBD oil, Eddy's seizures stopped," tells a still-amazed Katy. "They didn't just reduce – they disappeared. And now, with each passing month, the milestones just keep coming."
Earlier this year, with her family in tow and Eddy at her side, Katy stood up at a Health Select Committee meeting in Wellington to put forward her case to have medical marijuana legalised in NZ. It's a decision that our government is still tossing and turning over.
But as they look at the overwhelming evidence that proves CBD oil is a beneficial treatment for many medical issues, with the World Health Organisation announcing that there are no side effects and zero dependency potential, Katy is left forking out $1000 a week to ship it in from overseas.
"Initially, I didn't tell anyone," admits Katy. "I couldn't tell a doctor the real reason why Eddy had been miraculously cured. I was scared that he would be taken away from me.
"But with each passing day, I became more and more determined because those who need it deserve the right to live a life away from suffering."
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