In October 2015 the then premier of NSW Mike Baird published a lengthy note on his Facebook page about an encounter he'd had with a young boy named Tyler Oldenburg.
Tyler has up to 40 seizures a day and his mother, Nicole, thinks medicinal cannabis will help. Baird said he was proud that NSW was "leading the nation" in researching the controversial drug.
"It's my deepest hope that, as a result of these trials, Tyler and his family will soon be able to face a much brighter future," he wrote.
Almost 18 months later Tyler and his parents, Mathew and Nicole, were among the medicinal cannabis activists and patients gathered at the Sydney's Ethics Centre on Wednesday as part of the The Greenlight campaign to improve access to medicinal cannabis.
Nicole told BuzzFeed News about her struggles to source medicinal cannabis for Tyler.
"These politicians, you get the feeling they just take advantage of you," she said.
Nicole and Mathew have not heard from Baird – who resigned as premier in January – since they met in 2015, despite repeated efforts to make contact.
Tyler currently takes a combination of four medications and has a ketogenic (low carb, high fat) diet. He has already exhausted six other anti-epileptic medications.
Tyler has epilepsy, cerebral palsy, and vision impairment and despite all of these conditions has been told by multiple doctors that his case is not severe enough to warrant a place on medicinal cannabis trials, or to be prescribed medicinal cannabis.
Tyler is not alone.
Karen Edwards' young daughter Bethany, who has intractable epilepsy, also met Mike Baird in 2015.
Karen, who is also part of the Greenlight campaign, told BuzzFeed News she was struggling to find a legal pathway for medicinal cannabis.
Bethany used illegally sourced cannabis oil for 12 months, and her seizure activity decreased dramatically.
However Bethany is no longer taking the oil after her mother became worried about the multiple raids and arrests surrounding the drug.
Karen and Bethany have visited multiple doctors who told them Bethany's condition was not severe enough to warrant medicinal cannabis.
"So, what is?" Karen asked BuzzFeed News. "My daughter has brain damage [from seizures]... what does her condition need to be?"
Lucy Haslam, whose son Dan campaigned for medicinal cannabis when he was battling cancer, said many people who could be helped by medicinal cannabis were still regarded as the enemy by the government.
"The reality is that Dan died two years ago and here we are," she said. "The fact is, genuine patients are still criminals."
The accessibility of medicinal cannabis has barely improved despite an increase in campaigning over the last two years.
The federal government is sending out mixed messages by "legalising" medicinal cannabis one day, only to change the access schemes put in place for patients to get the drug.
Cannabis is now the only unregistered therapeutic drug that patients with life-threatening conditions are unable to access under Category A of the Special Access Scheme.
Instead, they are forced to move through the laborious and painstakingly drawn out Category B process. For Dr Alex Wodak, who spoke at the Ethics Centre, the major obstacle is clear: "Unless we reform our drug laws it will always be a struggle for medicinal cannabis."
Brad Esposito is a news reporter for BuzzFeed and is based in Sydney, Australia.
Contact Brad Esposito at firstname.lastname@example.org.
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