At one point, Jakeb Adams was having up to 500 seizures a day.
The 14-year-old has epilepsy, autism and the mental age of an 18-month-old.
His mum Melany Adams is desperate to give her son medicinal cannabis.
Jakeb's and other cases like his are the reason for a bill before parliament which would allow people with a qualifying medical condition to grow their own cannabis plants and use the drug for therapeutic purposes.
The law reform has the backing of Labour, the Greens, and Act. National does not have any specific pro-reform plans and has consistently opposed calls to relax the law around recreational drug use.
Adams, who lives with Jakeb and her four other children in east Auckland, spoke to the Herald in the hope political parties would heed her cry for help.
Jakeb's seizures violently throw him to the ground - sending him crashing through glass and falling off swings. He has broken his nose, dislocated his shoulder and cut his head open countless times. Now he wears a helmet day and night for protection.
"Mentally he's about 18 months, but physically he's 14-years-old," Adams said.
"You're running after a baby in a big person's body.
"He is resistant to all the drugs he's tried. So they either make the seizures worse or bring on a different kind of seizure or they change his personality."
Jakeb has tried 15 medications and had two operations where doctors removed chunks of his brain.
Some of the risks of his medications included being left in a vegetative state and a possibility of blindness. One medication the family chose not to pursue had a risk of death.
"The benzos [a group of drugs used as tranquilisers] basically dampen down brain activity to a vegetative state," Adams explained.
"By doing that you can stop seizures because the brain is not working but then you have a child who is not having seizures but also not functioning.
"So I don't think that cannabis-based products are really a big issue for us compared to those."
Doctors had suggested a third surgery to remove more of Jakeb's brain, but Adams declined as it would impact his ability to play on a swing and run around - the things he loves doing.
Adams believes a pure cannabinoid (CBD) product could dramatically reduce Jakeb's symptoms.
Products Adams has looked at come at an eye-watering cost of $100,000 a year.
One product, backed by New Zealand charity Medical Cannabis Awareness, is produced by a Canadian company called Tilray.
But while CBD products are available in some countries, patients in New Zealand find themselves in a catch-22 situation.
The Ministry of Health says doctors may prescribe pharmaceutical grade CBD products to patients in New Zealand, but no products have yet been approved that do not contain Tetrahydrocannabinol (THC).
Import restrictions mean it is difficult to source products from other countries.
If Adams imported it herself New Zealand Customs would stop the product at the border.
Adams says she has friends in the US who have children with similar conditions to Jakeb who have taken CBD products and their seizures have stopped.
Only 10 non-pharmaceutical grade cannabis-based product applications have been approved in New Zealand since June 2015.
Approval from the Ministry of Health is required before most cannabis-based products can be prescribed. An exception is Sativex for people with multiple sclerosis.
There have been 231 applications approved for Sativex - a half Tetrahydrocannabinol (THC) and half cannabidiol (CBD) product - since it was first allowed in 2008.
But not all of the approvals would have resulted in a prescription and people with multiple sclerosis don't need approval so they are not included in the figures.
Adams says Sativex wouldn't work for her son as the THC would exacerbate his risk of psychosis, Adams says.
Dr Graham Gulbransen, who has worked as an addiction specialist and GP for 30 years, agreed that different cannabis products were needed to treat a range of patients.
He said higher THC quantities benefited those who have issues with their nervous and immune system but could exacerbate problems for those susceptible to mental health issues including psychosis.
"Many people are not responding to conventional medicine. On compassionate and medical grounds there's good evidence for using medicinal cannabis when nothing else is working.
"I would like a range of pharmaceutical grade products I can reliably prescribe, so if one is not working others can be tried... rather than people getting their medicine from drug dealers."
Medical Cannabis Awareness coordinator Shane Le Brun has advocated for Jakeb to doctors, CBD suppliers and MOH to access the pure CBD product over the last year with no success.
Le Brun's single greatest hope is Green MP Julie-Anne Genter's private members bill that was drawn in June. Genter is awaiting the first reading.
The bill would amend the Misuse of Drugs Act to make a specific exemption for any person with a qualifying medical condition to cultivate, possess or use the cannabis plant and/or cannabis products for therapeutic purposes, provided they have the support of a registered medical practitioner.
Genter said it was still too difficult to access medicinal cannabis with the small changes that had been made so far and it was extremely expensive.
"We need to change the law," she said.
"It's quite urgent and it's a human rights issue that we stop making people criminals who are using cannabis or cannabis-based products on the black market in New Zealand.
"We don't want there to be a black market, we want to bring it into the open so products can be tested and it can be grown here in New Zealand."
Through tears, Adams spoke about how amazing it would be to see Jakeb progress.
"Jake's never spoken. I would love to hear him speak. He was just a baby when it started so we've never seen him grown up. He's just been a baby his whole life."
Labour Party MP David Clark said if he became Minister of Health he would extend an invitation to meet Jakeb's family to talk about what we can do to help.
"Labour is committed to looking at ways to improve access to medicinal cannabis in our first 100 days in office."
1927 The Dangerous Drugs Act was passed which made it an offence to import, produce or deal cannabis but it remained available on prescription.
1975 The New Zealand Misuse of Drugs Act 1975 prohibited any use of cannabis, including medicinal. However the Minister of Health has the power under section 14 of the act and associated regulations to issue licenses permitting medicinal cannabis use.
2003 The Health Select Committee recommended the Government support the prescription of medicinal cannabis.
2008 Sativex was first prescribed with a sign-off from the Minister of Health.
2009 Green party co-leader at the time Metiria Turei's Misuse of Drugs (Medicinal Cannabis) Amendment Bill was defeated 86-34.
2010 The New Zealand Law Commission made a recommendation to allow for medicinal cannabis use.
2011 New Zealand's medicines regulatory agency Medsafe gazetted Sativex as an approved medicine in New Zealand. This means patients can now go to their regular GP for a prescription, rather than needing an additional specialist but they still needed ministerial sign off.
June 2015 The first non-pharmaceutical grade cannabis-based product application was approved by Associate Health Minister Peter Dunne.
December 2016 The Ministry of Health granted approval for doctors to prescribe, supply and administer Sativex to people with multiple sclerosis without getting ministerial sign off.
June 2017 Green MP Julie-Anne Genter's private member's Misuse of Drugs (Medicinal Cannabis and Other Matters) Amendment Bill was drawn. It is likely to have its first reading this year after Government has formed.
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