"When he was 6-weeks-old, he started having these things identified as "baby jerks". I was scared, it was the unknown. Naively I just thought that whatever was wrong the doctors could fix it, they would just sort it out.
"I didn't understand that 15 years later it would be the same thing. They strike at any time."
The solo mother is fundraising to pay for Sativex - an oral spray containing cannabis extracts which has been anecdotally used to reduce epileptic fits in the past. A Givealittle page in Rhody's name has now reached more than $8000.
Rhody was rushed to Starship on November 4 after his epilepsy spiked and has been there ever since, enduring constant seizures. He is now medically stable but unable to leave without 24-hour care.
Ms Collins has been running her own businesses from home for the last 15 years including marketing, business mentoring, and kickboxing training, but has had to give that up due to the needs of Rhody's condition.
She was told about Sativex by another parent, whose epileptic child went from up to 15 seizures daily to one seizure every 10 days on the drug.
It is legal in New Zealand for approved patients, but is not funded for epilepsy, meaning approved patients pay more than $1000 per month.
They had tried everything - prescribed anti-epileptic medication, naturopathy, diets and exercise, acupuncture and homeopathy - but nothing had worked to stabilise his condition long-term, Ms Collins said.
"I've kind of been on a 15-year quest, I suppose you'd call it. I needed to leave no stone uncovered really," she said.
"The research that I've read and a lot of the people that have experienced [Sativex] first-hand, everyone I've spoken to has had positive results for their quality of life, and that's all we're after.
"What's delightful about him is his emotions are so pure. If he's happy, he's completely happy."
University of Otago cannabinoid expert Dr John Ashton said the effect of Sativex on epilepsy was "uncharted territory", but studies indicated there might be a moderate effect.
Other cannabis-based products being trialled for childhood epilepsy might be options to look at, he said.
"[Sativex is used for] people with MS for controlling their convulsions. Convulsions are another type of epileptic fit basically, over-activity in the brain causing the muscles to spasm.
"For epilepsy there may be some sort of scientific evidence that it may have moderate effects, but I don't think it's actually marketed or indicated specifically for epilepsy."
Pharmac, the agency responsible for deciding which medicines get subsidised, initiated an assessment of Sativex for the treatment of epilepsy, pain and spasticity this year after receiving a number of applications from patients.
The Pharmacology and Therapeutics Advisory Committee advised Pharmac in August the treatment should be declined funding because there were no controlled trials which proved Sativex worked in epilepsy cases.
"The next step in the process is for Pharmac to assess the relative priority of funding Sativex compared with other funding options," a spokesperson said.
• Visit givealittle.co.nz/cause/bringrhodyhome for more information.
Sativex in epilepsy:
• In October this year, 7-year-old Rotorua girl Zoe Jeffries was granted approval to use Sativex for her severe seizures for six months. The youngster has uncontrollable epilepsy, spastic quadriplegia cerebral palsy, microcephaly, cerebral visual impairment and is tube-fed. Her family said they had already noticed positive signs of improvement after three weeks.
• Northland woman Alisha Butt, 20, was prescribed Sativex this year for uncontrollable epilepsy.
• Whangarei epilepsy sufferer Jade Guest reportedly improved dramatically after she was taken to Colorado in 2014 to be treated with medical marijuana. Jade was suffering up to 40 seizures a day before starting treatment.
• Earlier this year, 19-year-old Alex Renton's family campaigned for him to be given medicinal cannabis. In June he was prescribed Elixinol, a cannabidiol made from hemp, and was the first person in New Zealand to receive the cannabidiol in hospital. Mr Renton died on July 1 at Wellington Hospital.
