A single mother of five children – the eldest of which suffers from Dravet Syndrome – Toni-Mari Matich has become an international voice in the fight to legalize medical cannabis by simply asking that her daughter be allowed to live a better, healthier life.

Reprinted with permission from the author. This story originally appeared on October 26, 2014 at http://www.stuff.co.nz/

I have been advocating for the introduction of medicinal cannabis for about 4 years.

I am a solo mother of five children and my eldest daughter, 17, suffers from Dravet syndrome, a intractable, life-limiting and progressive form of epilepsy where she would seizure up to 1000 times a day.

My daughter has been on dozens of medications. She has undergone a vagus nerve stimulation (VNS) implant – one of the first in New Zealand – which was ineffective, high dosages of steroids, and other more alternative treatments such as sacral massage and naturopathic remedies.

By the end of 2012 she had had 122 hospital admissions for non-convulsive and convulsive status (ongoing prolonged seizure activity). Some of these admissions were to ICU, and despite having two very proactive and compassionate pediatricians we were told to prepare for the worst and hope for the best.

My daughter at that time was largely wheelchair-bound, oxygen reliant and out of school for five years. We relied heavily on funded respite and other various support services, all at a large expense to the government.

Before I got married and started a family my initial studies were in science and technology. I also went on to study a certificate in horticulture from home when my eldest children were younger. Over the years my full-time job became being my eldest daughter’s career.

This extends into an advocacy role for every aspect of her care from special education through to funding. It is, at times, often an exhausting role as I try to navigate through the various appointments and systems of support.

In 2012, when we received a heartbreaking prognosis, I started to look desperately into any other possible treatments that could extend her life and give her a better quality. I learnt of medical cannabis through an American Dravet support forum and, to be honest, I was at first pessimistic. However as I researched and reached out to those with knowledge I soon learnt that it may very well have therapeutic benefits for my daughter.

I also learnt that due to the illegality of the plant and the lack of research and evidence of its benefits or efficacy ,it wasn’t available to us here in New Zealand.

What I did next was risky and illegal. I imported seeds of high CBD (cannabidiol) and low THC. Over 18 months I had it cultivated and tested to ensure it was clean of micro organisms, solvents, metals and any other potential contaminants. That was an expensive and risky undertaking whilst caring for someone so ill.

I made the plant matter into a tincture, which was again tested for adequate ratios. I consulted with several specialists in the US as to possible issues with other medication my daughter was on, and dosaging ranges. This too was expensive and time consuming.

We started the tincture in 2013. Within three months seizures had reduced by at least 50 percent. By six months people were commenting on her speech being clear, and she was becoming less dependent on her wheelchair or other aids.

Within a year she was back to attending a special school four days a week.

Life was wonderful. We went out as a family. My daughter’s personality was discovered as it emerged out of the cloud of post-seizure state that caused such severe brain damage.

By the end of the first year I informed her pediatrician of her being on the tincture. He was surprised and also concerned, and he advised me responsibly of the possible consequences, as well has being compassionate and supportive of my choice.

In October last year, after 22 months of significant reduction is seizures, the seizures began returning and unfortunately the ability to have the plant material tested fell through. It was advised that a different ratio or strain could again be effective, however I couldn’t risk not having testing.

I have no regrets for what I did. I gave my daughter the best quality of life over that period against the odds of her condition – currently her seizures are poorly controlled and she is again regressing.

AN INDUSTRY WITH ISSUES

I want to share our story and my role within United in Compassion NZ (UICNZ), which has seen 7000+ individuals join wanting access to medical cannabis. Many of these people are either out of time or out of options and their stories are overwhelmingly sad; these are individuals with cancers, intractable epilepsy, HIV/aids, motor neuron disease, multiple sclerosis, chronic pain, and others. These people come from all walks of life and they are vulnerable, exhausted and desperate to know if medical cannabis could possibly improve their quality of life and reduce the symptoms of their illness.

We hear and read of the remarkable stories globally and like my daughter’s, but what we don’t hear about is the lack of regulation of products, the patients who don’t benefit from it or those who suffer side effects.

The disturbing part is those out there known as ‘snake oil sellers’ who sell bad products to vulnerable people at horrific prices without containing what they claim to.

It is an industry with issues like any other and we need to take both the negative aspects and positive of this from a global perspective and consider how we can learn from it to progress logically.

I recently met with Peter Dunne, in conjunction with Ross Bell from the New Zealand Drug Foundation, and with the support of the Children’s Commissioner, who have both acted as mentors and advisors to me. The meetings have been constructive and the Minister has always been approachable and compassionate.

Dunne tasked me with a working group within the Health Ministry, who we frequently engage with on this issue, assessing how to logically progress this issue in the current political and medical landscape in New Zealand.

The purpose of my recent meeting with Dunne was to find out whether there is the ability to run observational trials under compassionate grounds for those who would meet such circumstances and whether we could collaborate with our Australian branch, which is working on regulation and trials over the ditch.

UICNZ is planning on running a first-of-its-kind medical cannabis symposium in March 2016 to bring international and national experts.

What we lack is support from those who could be advocating more for patients. I have written to the New Zealand Medical Association seven times this year and received not one response. Our organization has approached more than 200 relevant organizations in New Zealand over the past two years to garner support, not one has responded to us.

So the issue doesn’t just sit with the Health Ministry or the Minister, this issue sits with the conservative public of New Zealand and those who could be doing more to support logical progress and appropriate support, education and research of this issue.

If we are to progress this issue in New Zealand then it must be done logically.

I ask that people keep an open mind on this issue.

Toni-Marie Matich is the co-founder and CEO of United in Compassion NZ, a not for profit charitable foundation for the re-introduction of medicinal cannabis.