Katelyn Lambert: Dravet syndrome and medical cannabis

Watching his 6-month-old daughter spasm endlessly in pain led Michael Lambert to blithely break Australian laws. 3 years later, Katelyn's remission has resulted in a donation of 33.7 million $ to medical cannabis research in Australia.

Today Katelyn is 4 years old. She suffers from Dravet syndrome, a very severe form of childhood epilepsy. Since she was 6 months old, Katelyn has suffered from very strong epileptic seizures, which can last more than 2 hours. Katelyn has a 50/50 chance of dying before the age of 18, and a 100% chance of suffering from intellectual disability. On some days, she has had over 1,000 seizures, one every 15 seconds.

«It was terrible. She was electrocuted to death,» says Mr Lambert. «I asked myself, »How can I stop this? Then I heard about Charlotte Figi.

Charlotte Figi, also suffering from Dravet syndrome, had seen her seizures dramatically reduce after being treated with a variety of medical cannabis very high in CBD.

So Michael ordered cannabis oil online, and immediately gave it to his daughter.

«The next day, I kid you not, she woke up. She didn't look static and lost, she just looked normal. She stopped shaking. She was so much better straight away. This gave her hope despite the short life expectancy associated with Dravet syndrome, and the consequences of past seizures on the brain.

«It's a fantastic plant. It has given us hope for Katelyn's future. We can see the consequences [of previous epileptic seizures] but we also know that her brain is growing. There is hope. She has a future. If we can stop her seizures, then we can give her a future,» he says.

He insists that medical cannabis doesn't get his daughter high (no THC inside) and that his daughter is also taking other treatments.

Katelyn's grandparents made headlines in Australia when they donated 33.7 million $ to the University of Sydney for medical cannabis research (one of the largest private donations in Australian history), now known as the Lambert Initiative for Cannabinoid Therapeutics. Research will focus not only on Katelyn's case, but on the global use of cannabinoids in medicine.

Michael was arrested last year and charged with cultivation and possession of cannabis. He pleaded not guilty in the hope of being released on medical grounds. «I'm not going to have a criminal record. I'm going to win,» he confides.

Michael will continue to seek conventional medical treatment for Katelyn, but says cannabis is a medical necessity. «You can't let a father watch his daughter die».

A 60 Minutes report looked at Katelyn, her father Michael and her grandparents this weekend. Some excerpts are available below.