Four-year-old Katelyn was diagnosed with Dravet Syndrome after she started having fits at six months-of-age.

The condition is noted for a couple of horrifying statistics – a one-in-two chance of dying before the age of 18 and a 100 per cent chance of intellectual disability.

Those stats don't take into account the various, numerous types of seizures, sleep disorders and the constant need for families to be close to medical facilities.

Traditionally, Dravet Syndrome has been treated with a range of drug programs, however these have had mixed results. For patients like Katelyn, a new medical program is sorely needed.

This, according to Michael, is where the medicinal use of cannabis comes in, along with his courage to take on the courts and political establishment, to change the NSW drug laws.

His determination to assist four-year-old Katelyn could see the laws change to accommodate the medicinal use of cannabis.

“When Katelyn was a baby she had more than 1,000 seizures a day, one every 15 seconds,” he said.

“These fits were terrible and despite the treatments we undertook over the years – at least seven different types of medications, different programs, different levels of dosages … well she was getting electrocuted to death.

“I thought, ‘how the hell do you stop this?’ That’s when I heard about Charlotte Figi.”

Charlotte was a US toddler with Dravet whose seizures decreased dramatically after she was given a strain of cannabis called CBD.

He ordered the cannabis oil online from Denmark and when it arrived he gave it to Katelyn straight away. 

“The next day, I'm not kidding you, she just woke up, she stopped jerking … she got better straight away,” Michael said.

Astounded and relieved Michael thought he’d won the jackpot, but that’s when he hit the next hurdle.

“While the federal government has given Katelyn an exceptional permit, for ‘special access’, to take cannabis for her condition, the NSW government does not allow the supply or possession of cannabis.

“This leads to a farcical situation where every-day mums and dads cannot get proper medication for their children – they can be arrested by the police.”

If you think that’s just a theoretical situation, it’s not.

Last year, police raided Michael’s full-time residence on the Central Coast to take Katelyn’s cannabis medication.

He faced court and he acknowledged there is no defence.

“There is nothing in the law that helps my family and Katelyn … but we are taking this to the High Court,” he said.

The Lambert’s struggle is happening at the same time the state government debates the issues surrounding medicinal cannabis. 

While the police are still actively seeking out cannabis supplies, parliamentarians are setting up trial cannabis farms. 

Moreover, places like the US and European countries are increasingly legalising cannabis.

In tandem, many in research and within the medical establishment are looking to ‘cannabinoid’ compounds found in marijuana as a potential use to treat a range of illnesses, including childhood epilepsy.

Looking to aid the science are Katelyn’s grandparents.

Barry and Joy Lambert have been helpless to support their granddaughter despite being named on the BRW rich-list. Last year, they donated an unprecedented $33.7 million to fund research into medicinal cannabis at the University of Sydney.

“When you get to the end of the road you try desperate measures,” Joy said.

The funds, University of Sydney psychopharmacology professor Iain McGregor said, will focus on 10 key ‘cannabinoid’ compounds.

“Only one [THC] is psychoactive,” Professor McGregor said.

“We want to explore one of the most exciting questions in modern medicine – the new science of cannabinoids has incredible potential for relief of human suffering … and to repair damaged bodies and brains.”

It has been reported that the pre-clinical research in Sydney has found one of marijuana’s compounds improves memory in mice with Alzheimers-like symptoms.

Researchers say about 10 of its roughly 100 compounds are sufficiently well known for trials to be feasible. The scientific potential of the others remains unexplored.

“The centre could grow its own cannabis for the research under licence from the state’s chief pharmacist and will also seek to synthesise cannabis compounds in a laboratory,” Professor McGregor said.

* In March GW Pharmaceuticals announced the results of a Epidiolex (cannabidiol) study in the treatment of Dravet Syndrome. The pharmaceutical company claims “they achieved positive results showing that Epidiolex treatment reduces convulsive seizures in children compared to placebo”.