WITHIN minutes of the State Government announcing a $6 million medicinal cannabis trial this week, Blue Mountain Heights mother Rhonda Miles registered her son for the program which could save his life.
Lachlan Miles, 16, has severe drug-resistant epilepsy which he has battled for years and dramatically changed the quick-witted teenager's life.
He is now waiting to learn if he earned one of 30 spots on a clinical trial set to start by the end of the year.
"Not all epilepsy patients respond to this product but it is a step forward," Mrs Miles said.
"Even if we don't make it on the trial - and we're hoping we will - we know there will be 30 families who will get a benefit.
"In the world of epilepsy, it's a big deal."
Lachlan bravely chose to release to The Chronicle footage of him having a seizure early one morning while asleep at home.
While it could be considered confronting to some, the seizure is all too common at the Miles' home.
He said watching the footage could give people a better understanding of epilepsy and the importance of the clinical trials.
"It (the trial) could save my life and I hope it does, because if it does, it would be a thriller," Lachlan said.
The trial will give access to Epidiolex on a compassionate access scheme which means no placebos will be used in the trials.
Developed by GW Pharmaceuticals, Epidiolex is a liquid form of pure cannabidiol and the program will be led by Lady Cilento Children's Hospital paediatric neuroscience director Dr Geoff Wallace.
State Health Minister Cameron Dick said the trials should start by the end of the year.
"We can't cure severe treatment-resistant childhood epilepsy, but I want those children and their families to know that we are doing everything we can to ease their suffering," Mr Dick said.
Lachlan's dad Greg Miles said the family had been heartened by the strong results from overseas trials.
He said successful results from the trial could deliver mass savings to the government and health departments.
"When you think about how much it costs the government to have Lachlan in the emergency department over 12 months, it's a big expense," he said.
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