A TAMWORTH woman has told of the remarkable transformation in her nephew’s life-threatening medical condition since discovering cannabis oil.
Shirley Kirk has a simple message for NSW politicians grappling with the issue of whether to decriminalise medical marijuana – just do it.
Born at 30 weeks in early 2011, her nephew Cooper has had a catalogue of health issues almost too numerous to mention, among them cerebral palsy, epilepsy, infantile spasms and global delay development.
His seizures, occurring at an incredible one per minute, were so profound he required around-the-clock care and was unable to walk, talk or process sight to recognise family members.
“Cooper’s seizures were constant and uncontrolled ... we all lived with the constant presence of his death,” Ms Kirk said.
He trialled nine different medications and weathered some severe side effects, but none were able to control his seizures.
In desperation, the family turned to a product called Mullaways Cannabinoid Tincture, an alcohol-based form of cannabis oil.
The results were stunning.
“Within 15 minutes of his first dose, he began tracking objects with his eyes,” Ms Kirk said.
“He had never done this before.
“His latest EEG showed that while seizure activity is detected in his brain, he is not actually seizing.”
Now three-and-a-half, Cooper plays, smiles and laughs, can say “mum” and “dad” and just days ago sat up for the first time.
“It’s simply amazing,” Ms Kirk said.
“The family can now visit friends and plan holidays. They are not housebound in the expectation of a severe seizure at any time.
“We do not see the shell he was forced into from his seizures, we see my nephew.”
Last month the supplier of the cannabis oil was arrested and charged for drug supply in Kempsey, jeopardising the family’s access.
“My greatest fear is that my sister will be unable to continue to administer the cannabinoid tincture to Cooper,” Ms Kirk said.
“Without continued medication, Cooper will return to his previous level of functioning and will continue to deteriorate until his death.”
Dr Alex Wodak, a former director of St Vincent’s Hospital’s alcohol and drug service, said more research needed to be done into the effect of cannabis oil on children with intractable epilepsy.
“There’s been very little scientific investigation done on it. It leaves policy makers in a quandary, because they want evidence-based policy but research isn’t being done, despite compelling anecdotal evidence,” Dr Wodak said.