When Jo Freeman's son was born, he looked perfect to her.
"To me he didn't look different," she tells 9Honey. "He was my first child. To me he just looked normal. I had no idea."
To medical staff, however, baby Cooper's telling facial features warranted further testing.
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Jo and her husband were told their son had a rare chromosome deletion. They were also told their precious little boy would never walk, talk or eat.
Cooper is now six and completely dependent on his devoted parents and carers. Still his parents were proud of the life they had created for their son.
That is, until his fourth birthday, when Cooper's health took an unexpected turn for the worst.
"The first time it happened, I thought he was dead," Jo says. "I went to his cot to check on him after his lunchtime sleep and he was just starring vacantly straight ahead, not moving.
"I ran out the back with him and screamed out to my neighbour to call an ambulance."
She says it's not uncommon for epilepsy to develop later in life. "It's one of those things we have to cross our fingers and toes that he outgrows it," she says.
The impact of the seizures on her son, however, was devastating.
After the first seizure, Cooper was okay for the next two months. Then he had another, and they gradually increased.
"He'd just vacantly stare ahead," she said. It wasn't just the seizures themselves that terrified Jo, but the effect they had on Cooper afterwards.
The impact of Cooper's seizures was devastating. (Supplied)
"The aftermath would last three or four hours," she said. "They'd just wipe him out."
Before the epilepsy began, Cooper was attending preschool most days. After the seizures, he started missing days.
"He'd have seizures at 7am before preschool and then sleep for hours afterwards," she says.
Jo tried treating her son with traditional epilepsy medications -- Epilim, Keppra, Zonegran. However with traditional medication came with side-effects.
"I was very much in the disability world by that stage," Jo says. "So I was talking with other mums and discussing Cooper's therapies and that's when they told me to try cannabis oil."
Jo and her husband just wanted their little boy back. (Supplied)
She had nothing to lose.
Cooper had gone from living the best life possible to being plagued by terrifying seizures and his parents were desperate to have their little boy back.
"Another mum put me in touch with a health and wellbeing store in Western Australia," she says.
Jo began purchasing cannabis for her son, but due to a change in government regulations, she wasn't able to access it for long.
Cooper's doctors tried to find a clinical trial for him to join, but he would have had to stop all other medications.
"I couldn't put my child through that," she said.
They were desperate to help their son. (Supplied)
It was then that Jo decided to move the family from the Hunter Valley in NSW to Picnic Point closer to Sydney.
"I was too isolated and the stress was giving me a nervous breakdown," she says. "I developed extreme anxiety attached to Cooper's seizures."
Cooper was suffering from up to 10 seizures a week, and attempts to access cannabis oil for their son had become risky and difficult.
"Even one a week impacts your life," she says. "10 a week was controlling my life. He was knocked out every day. We couldn't go out. We couldn't do anything."
Epilepsy Action Australia has been campaigning for medical cannabis to treat epilepsy, with the latest research showing 86 percent of those surveyed found cannabis oil helped manage their seizures.
Cooper has been seizure-free since February 10. (Supplied)
Soon Jo found a new paediatrician in Sydney and begged him for help.
"I told him my sad story and he said if we had the money, we could do a self-funded clinical trial on cannabis oil," she explains. "If you want to pay for it I'll get it signed off."
The doctor organised a waiver from the government so the family could purchase the treatment for their son. That's when they because using a high-quality cannabis oil from a company called Tilray.
They've now been using it for the past 12 months and the impact has been amazing.
"The problem with the cannabis oil we were using before was that we didn't know the concentration level," she says. "The beauty of the cannabis oil we were getting from Tilray is that we know exactly what is in it, and the concentration level."
He now attends primary school each day. (Supplied)
Jo says since treating Cooper with Tilray cannabis oil he has been regularly attending preschool.
"His last seizure was on February 10," she says. "He's been seizure-free ever since. Today Cooper is at 'big school' and the difference is, before we never made it to preschool never two days a week.
"This year at 'big school' we haven’t missed a day," she says. "That’s where my story is a great story. It did change our lives, this product. But the saddest part is until government put it on Pharmaceutical Benefits Scheme (PBS) we are committed to this, and to pay this huge amount of money."
The family are paying $35,000-$50,000 a year for the cannabis oil to treat their son, working around the clock to be able to afford it.
"Financially my husband and I have to work our arses off," she says. "It's like paying a mortgage. We are so committed due to the results."
While Cooper does received money from the National Disability Insurance Scheme (NDIS), they are unable to use any of it to pay for treatment for epilepsy.
"NDIS money can't be used for epilepsy because it isn't classed as a disability," she says. "We are just going to live on our path and my husband will do whatever we need to do for him."
"We could never ever stop," she says. "We could never let him go back to what it was like before."
Originally published here: https://honey.nine.com.au/2018/11/20/13/13/child-medical-cannabis