'Miracle treatment": Larisa Rule with her parents Jaylene Siery and Peter Rule. Photo: Marina Neil. Photo: Marina Neil

She is blind, partially deaf, has cerebral palsy and can suffer up to 60 epileptic seizures a day. To say 23-month-old Larisa Rule's life so far has been a heart-breaking struggle is an understatement.

Now, after watching her daughter suffer since she was a newborn, Jaylene Siery has finally found something which eases the number and the severity of the little girl's seizures and gives her some much needed relief.

There's just one catch - the "miracle treatment" is illegal. In administering cannabis tincture oil to her daughter three times a day Ms Siery is breaking the law and risking prosecution.

Jaylene noticed an almost immediate improvement in Larisa's condition after administering the cannabis tincture. Photo: Marina Neil.

But the desperate mother is unapologetic.

"We tried 18 different combinations of anti-convulsant treatments before this, and she would still be having dozens of seizures every day,'' Ms Siery says. "Also the side effects of those drugs are severe. She can get a really bad rash and they effect her breathing and heart rate. She is sedated by them, tired and unable to eat.

"Since starting the tincture in December she went from having 60 seizures a day to about five and now they only last about one minute each instead of as long as five minutes. She is also more alert, has more movement, is aware of her body and is eating again.''

Larisa's battles began almost from the moment she was born at Gosford Hospital on the NSW Central Coast on March 30, 2012.

Like most newborns, Larisa's first day of life was filled with feeding, sleeping and cuddles with mum and dad. However things quickly went downhill and Ms Siery and partner Peter Rule now remember those blissful 24 hours with their first baby as the calm before the storm.

At just two days old Larisa's tiny body began suffering uncontrollable seizures which led to her being transferred by helicopter to the Children's Hospital at Westmead, Sydney where she remained hooked up to monitors for weeks.


Larisa underwent countless medical tests in her first months of life which resulted in her being diagnosed with panhypopituitarism - due to an absent pituitary stalk - which means her body is unable to make essential hormones.

It was also discovered seizures during the first days of life left Larisa with brain damage which left her blind partially deaf. She has since been diagnosed with both epilepsy and cerebral palsy.

Ms Siery says her daughter has spent much of her short life in and out of hospital. In that time her seizures have worsened and late last year neurologists spoke to Larisa's parents about the possibility of palliative brain surgery in order to bring her condition under control. Although it is believed Larisa's seizures will eventually cause her brain to stop growing, surgery is not something her parents want to subject their little girl to.

Larisa Rule with her brother Eli. Photo: supplied.

In desperation Ms Siery asked doctors whether they thought medical cannabis could help her daughter and if they knew where she could source it.

"They basically just laughed at me,'' Ms Siery remembers. "But I had read about so many other kids being helped by it and we were at a stage where we would try anything to help Larisa."

Ms Siery's research led her to get in contact with Nimbin man Tony Bower who, as the director of his registered company Mullaways Medical Cannabis, is one of very few people in Australia who is open about the fact he produces medical marijuana products.

Mr Bower says his cannabis tincture oil "medicine" is low in THC, the compound which gives recreational marijuana users their high.

He says his oil, which is administered orally through drops under the tongue, is currently being used to treat seizures in about 200 children across Australia.

Mr Bower was imprisoned and sentenced to 12 months jail last year when police found him in possession of 200 cannabis plants. But his conviction was overturned on appeal and he was released after six weeks.

"I get hundreds of emails from parents each week asking if I can help them treat their children but I am unable to take many new patients on as I am limited in the amount of medicine I can produce,'' he says.

While Larisa is the youngest child in Australia whose parents have spoken about her taking cannabis tincture oil, Mr Bower says he has treated much younger babies.

"A lot of the damage which is done to the brain is done during seizures when they are only a few months old, so the younger they are treated the better the outcome,'' he says.

Larisa's family is thankful Mr Bower agreed to add her to his client list after he read a detailed description of the little girl's suffering.

"The results were almost immediate, we noticed an improvement on the second day we gave the cannabis tincture to Larisa,'' Ms Siery said.

Ms Siery and Mr Rule are now parents of two children following the birth of son Eli in November last year.

"Larisa is getting bigger now and her seizures can are harder to handle, and we have to look after our baby son too. Without the cannabis tincture our family life would become very difficult.''

Little Larisa's story is heart-breaking, but sadly it is not unique.

Thousands of parents across the country are constantly searching for new medications to help reduce the number and severity of seizures their epileptic children suffer on a daily basis.

They are calling on state and federal governments to support regulated clinical trials of cannabis oil and medical marijuana products in the hope they will one day be able to treat their children with it under a doctor's supervision.

Their calls are backed by the Epilepsy Foundation with the organisation's Client Manager Wayne Pfeiffer saying anecdotally cannabis tincture was effective in reducing the number of seizures experienced by some epilepsy sufferers.

"About 70 percent of people with epilepsy can control their seizures through the use of medication,'' Mr Pfeiffer said. "But for the other 30 percent who have tried as many as 12 different drugs and are still having uncontrolled seizures, I can see why they would be keen to try anything that may work.

"I particularly understand why parents would want to help their children get the best quality of life possible. We would support more regulated clinical trials of medical cannabis.''

However Australian Medical Association President Dr Steve Hambleton is adamant there is no scientific evidence which proves the benefits of cannabis products to treat epileptic seizures and that the well documented negative effects of long term marijuana use outweigh any benefits.

"A testimonial is not evidence. Because one person thinks it did or didn't work for them, that doesn't mean it does work or that it will have the desired effect for all people,'' he said.

"While it's illegal and highly likely cause more harm than good, parents should stick with known medicines and seek the advice of medical professionals."

Dr Hambleton said that given there are hundreds of chemicals in cannabis, there is a chance that one of them is beneficial in reducing the seizures suffered by epileptic children.

"If one of these chemicals is beneficial let's find out what it is,'' he said. "There are universities doing studies into that, and we are fine with those studies being done."

The concerns of long term effects of marijuana products to treat medical conditions was also noted by NSW Health Minister Jillian Skinner last year when the state government rejected a report calling for small amounts of cannabis use be decriminalised so it could be used as pain relief for people dying of cancer and AIDS.

"The government does not support the use of unregulated crude cannabis products for medical purposes as the potency and safety of these products cannot be guaranteed," Ms Skinner said. "The NSW government believes this will not prevent access to appropriate medical treatment for any patient in NSW, given the availability of safe and effective alternative medications".

Despite the fact there are no plans to make medical marijuana legal in Australia any time soon, in America a number of states have recently done just that.

In September last year New Jersey Governor Chris Christie signed a bill allowing sick children greater access to medical marijuana. The revisions to the bill, nicknamed "pot for tots," require that at least two doctors, including a pediatrician, approve the treatment and tightened the language to ensure that only minors could get access to edible forms of marijuana besides lozenges.

A Perth mother whose three-year-old daughter suffers up to 20 seizures a day due to a rare genetic condition says she would welcome a move to legalise medical marijuana in Australia.

"My daughter is on three anti-convulsant medications a day, plus a back up medication for abnormal or prolonged seizures, and she can still have anywhere from five to 20 seizures in a normal day.

"We have tried everything, she has been prescribed every type of medicine that she could be and nothing has worked. She is on the last three medications that might possibly work for her."

Due to her condition the little girl has developmental delays and can't walk or talk. Her desperate parents, who don't want to be named for fear of prosecution, are currently researching how to access medical cannabis.

"We are not expecting a miracle, we would just like our daughter to have some kind of quality of life. We would love for her to just have a break from the seizures,'' the mother said.

Queensland mother Christine McKay has been giving her six-year-old daughter Casey cannabis tincture oil since the middle of January and says it has made a dramatic difference to the quality of her daughter's life.

The family's decision to try the controversial treatment followed four years of trial and error with anti-epileptic medication and side effects which robbed the little girl, who began having epileptic seizures when she was two, of her quality of life.

Some medications left Casey unable to speak, walk or feed herself. Others controlled her seizures but led to extreme behaviour problems which meant the family was often unable to leave the house with her.

Ms Mackay hit breaking point at Christmas and told doctors she needed a sedative to control Casey's behaviour in order to make life bearable for her two younger children. But since starting the cannabis tincture oil treatment four weeks ago the family's life has improved significantly.

"We are seeing a happy Casey we haven't seen for a very long time,'' Ms MacKay said. "She is playing with her brother and telling us what she did at school when she gets home each day. We haven't seen her like this for a very long time."

Although Ms Mackay agrees it is too early to be certain the improvement in her daughter's condition is entirely due to the cannabis tincture, she said she would be devastated if she was no longer able to access it.

"The idea that we might not always be able to access it is a major concern. I don't know what we would do if we couldn't get it. We would be right back to square one again."

Larisa's family is equally fearful of losing access to cannabis tincture to treat their daughter.

"It would be terrible,'' Ms Siery says. "If we can't keep accessing cannabis tincture it would probably mean that Larisa's seizures would kill her."