The mother of Alex Renton – the teenager who survived for three months in a coma in Wellington Hospital – has admitted she administered cannabis oil to her son weeks before it was officially approved by the Government.
His mother, Rose, successfully campaigned for Mr Renton to be treated with cannabis oil, but she says behind the scenes much more was going on.
She denies the cannabis oil she gave him for weeks before it was approved had any harmful effects on her son or interacted with the seizure drugs the hospital was administering at the same time.
Over the past three months, the country watched as a happy, healthy young man fought for his life.
What turned such a private tragedy into a public issue is that for the first time in New Zealand, a cannabis derivative was allowed into the clinical environment of an intensive care unit.
Mr Renton's family's determination to treat his condition the way they wanted may yet mark a major change in our medical care.
On the face of it, it is a story about a gravely ill teenager who was allowed to be treated with an illegal drug, with cannabis oil. But the real story is about what a mother was prepared to do to save her son, and it's a story that Ms Renton is only now ready to tell.
3D first sat down with Ms Renton in Wellington in early June. Her son had been in an induced coma for 58 days, and every one of those days she kept a meticulous diary of his treatment.
His illness came out of nowhere. He was a strong boy, a rep rugby player. It was the beginning of April, a time of celebration for the family, it was his mother's birthday and she was getting married.
But in the next few days Mr Renton's health deteriorated.
"He just talked about being cold, couldn't get warm, headachey, no energy, and the doctor said it was just a flu and to go home and rest."
Two days after seeing the doctor, the seizures began. Mr Renton spent five days in Nelson Hospital before he was flown to Wellington – his condition critical.
Ms Renton was told her son had encephalitis – his own body was attacking his brain, causing near constant seizures. Why? We still don't know for sure.
More than 40 drugs were used to try and treat him. But nothing was working, and Ms Renton was preparing for the worst.
"I've said to him as he laid there, 'If you want to give up, I understand. I'll accept that.'"
Ms Renton fought. She was no medical expert. She was a feng shui practitioner in her day job, but above all she was a mother who believed in natural remedies, and she wanted Mr Renton to be treated with medicinal cannabis oil.
Still the doctors persisted with what they thought was best – a programme of powerful pharmaceuticals.
But with no progress at the hospital, she went public and found a great deal of support. People rallied to convince the Government to give Mr Renton a one-off dispensation to use a cannabis-derived drug.
When we spoke to Ms Renton in early June, she was convinced it would be effective. She said the tr
"I need to use them in conjunction [with the drugs the hospital wants to use]. I don't think miraculously he'll be seizure-free, but I think we'll see a change."
The product they'd asked for was Elixinol, a cannabis-derived cannabinoid oil readily available and legal in the United States.
On June 9 the Government granted a special dispensation on compassionate grounds for the hospital to incorporate cannabis oil in Mr Renton's treatment.
"Probably the best day of the last 61 days that we've had," says Ms Renton.
But there was something else going on behind the scenes that neither the public nor the hospital knew about.
Mr Renton made history as the first person to be treated with cannabis oil in a New Zealand hospital.
But even before that happened, his mother had secretly taken matters into her own hands, as she admits now for the first time.
"A mum in New Zealand sent me a brand new Elixinol."
She says she already had the product she had been fighting for and gave it to him secretly in the ICU.
"When no one was around I'd put it down the back of his mouth with a syringe. A mother would do anything."
She says she had been using the oil three weeks before the official treatment was approved.
"I don't care. They never listened to a word I said, ever. They never took any care. Why should I feel like a criminal for giving him something I know his body would respond to and need?"
Ms Renton took a huge gamble. If she was caught she would have been banned from the hospital and even arrested. So once the official oil arrived from the United States, she stopped giving her son her oil.
Anecdotally, CBD oil has shown promise treating severe seizures in children, but Mr Renton's case was unchartered territory; there was no clinical evidence that it would help, but Ms Renton accepted that. In her mind Elixinol was her son's last chance.
Two days after the hospital began its official treatment, Ms Renton publically announced a dramatic improvement.
The hospital never shared that view, saying the oil was of no value.
"At no stage did we observe any meaningful improvement in Alex's clinical state after starting the CBD oil."
Ultimately Mr Renton responded to nothing – pharmaceutical or alternative – and on July 1, after 84 days in a coma, he died.
"You could see he was drifting but he was peaceful," says his mother. "He had his arm around me and yeah, I just told him how much we loved him."
She believes the drugs killed him.
"They would say, the doctors and the hospital would say, it was the encephalitis and the refractory seizures, but I believe they could have dealt with Alex very differently from day one."
But Mr Renton's doctors disagree.
"The cause of Alex's death was constant seizures, which in the long term are non-survivable.
"The pharmaceutical medicines given to Alex were used to keep him sedated to stop his seizures. It is incorrect to suggest they caused him any harm."
But what about the cannabis oil that Ms Renton secretly gave him? Could it have interacted with the hospital's drugs in a detrimental way?
"Yes. The CBD oil could interact with some of the epileptic drugs because they are metabolised by the body in a similar way"
But Ms Renton denies she was putting him at further risk.
"No. Not when you see the drugs I saw. There's no way. I don't believe that at all. And at the end of the day Alex would say, 'I'd rather die with an overdose of CBD oil than any of the s**t that they put me on.'"
Just over a week ago, Ms Renton and her family and friends ended their vigil for her son with a special memorial service in Stoke.
As hundreds gathered for a public farewell, 19 balloons sailed free – one for each year of Mr Renton's life.
For the day, the controversy was put aside – a time for his six brothers and sisters to remember the person they've lost.
But for his mother, this fight isn't over.
"That's what Alex has left us; that's what Alex wants us to question and that's what Alex would want us to learn. If we choose to use medicinal cannabis in New Zealand then we should have that choice."