Urgent action: Lake Heights parents Yvonne Cooper and Daniel Phelps want legal access to medicinal cannabis for their eight-year-old daughter Sienna who suffers ''severe, uncontrolled'' seizures. Picture: Sylvia Liber
Legal access to medicinal cannabis can not come soon enough for Lake Heights mum Yvonne Cooper who fears her young daughter may die without it.
Ms Cooper is gaining widespread support for her online petition which calls on state and federal governments to provide ‘’immediate amnesty and access’’ to the drug for children like Sienna who suffer from severe seizure disorders.
More than 1650 people have so far signed the change.org petition she created on Saturday, after yet another harrowing night watching her eight-year-old child struggle for breath.
‘’Sienna has been having seizures her whole life, and at three years old was diagnosed with Doose syndrome, a rarer form of epilepsy which is often drug resistant,’’ Ms Cooper said.
‘’She’s on many different medications, but none are working and she’s experiencing up to 100 severe, uncontrolled seizures a day.
‘’She stops breathing during seizures – on Friday night I had to perform CPR on her while I was waiting for the ambulance to arrive.’’
Paramedics have been called to Sienna’s school eight times already this year, and many times to her home. Ms Cooper, and partner Daniel Phelps, say they feel helpless standing by.
‘’In the past 12 months the decline in her health has been rapid and specialists are telling me that they’ve tried everything – but they haven’t,’’ Ms Cooper said. ‘’We haven’t been able to try medicinal cannabis despite the huge amount of evidence showing it stops seizures.
‘’I don’t want to break the law, but I don’t want to bury my eight-year-old child. I don't want to break the law, but I don't want to bury my eight-year-old child. - Yvonne Cooper
‘’We know there are changes to legislation but that has meant nothing for us and our daughter. Not one doctor can direct us down the right path and there’s a long wait list for clinical trials – and Sienna doesn’t have that much time to wait.’’
Ms Cooper said legal medications had caused Sienna to suffer a range of ‘’devastating’’ physical side effects including fatty liver, renal impairment and anaemia.
‘’In the past six months her cognitive ability has also declined, with tests showing her IQ has gone from 90 to 100 to a range of 41 to 52.’’
Ms Cooper said her petition aims simply to allow children like Sienna, the chance to try medicinal cannabis. ‘’It’s not the first line of drug we would have chosen – but conventional medications are not working.’’
MPs support for fast access to life-saving drugs
Cunningham MP Sharon Bird this week put her support behind amendments to the Therapeutic Goods Act which would allow fast access to life-saving drugs – such as medicinal cannabis.
Ms Bird told parliament on Monday that streamlining the regulation of medicines would help many people with life-threatening conditions, including Towradgi man Ben Oakley who has stiff person syndrome.
Before using medicinal cannabis, Mr Oakley suffered more than 600 spasms in four years, including some lasting up to two hours. Since starting treatment two years ago, he’s had three spasms lasting no more than 20 seconds.
Ms Bird said despite federal changes to the Narcotic Drugs Act in February 2016 to allow cannabis to be legally grown for medicinal purposes, the process of legally obtaining it was ‘’complicated and confusing’’.
‘’After witnessing the battle that Ben and his family have been through to try and obtain medicinal cannabis legally, I support this bill’s intention to streamline the regulation of medicines and medical devices, while maintaining safety and quality, regulation of medicines and medical devices,’’ she said.
‘’Fast access to new medicines and medical devices is critical for people whose health and well-being worsens each day they wait for new treatments to be approved.’’
Ms Bird said Labor leader Bill Shorten had written to Prime Minister Malcolm Turnbull, offering to work with him to find a suitable overseas source to improve consistency of supply.
At a state level, research continues into the benefits of the drug, with an international forum on medicinal cannabis regulation held in Sydney on Wednesday.
‘’The NSW Government has committed $21 million towards world-first medicinal cannabis clinical trials and reforms,’’ NSW Health Minister Brad Hazzard said.
‘’We were the first state in the country to legislate to allow doctors to apply to prescribe cannabis products from overseas and are at the forefront of regulatory changes.
‘’We are pursuing a medical model in NSW. This is what will give some of our sickest patients the best hope – by providing access to safe, high-quality and effective medicines.’’