Medicinal cannabis campaigner, Vera Twomey, who fought a lengthy campaign to secure THC oil for her sick daughter Ava has published a book detailing her experiences.
At the book launch of "For Ava" in Eason Patrick Street, Cork, last night Vera said that they ran out of options to treat Dravet Syndrome the rare form of epilepsy which her daughter suffers from.
"There was nothing there for Ava other than Google and things like that. We did find some information.
Now because of medical cannabis, she is not on any pharmaceutical medication. She is moving forward."
Vera, who is from Aghabullogue, Co Cork, says that prior to her usage of medicinal cannabis her nine-year-old daughter Ava Barry was having up to 23 seizures in 26 hours.
Seizure she says were terrifying experiences as she never knew if her daughter would come out of one intact.
The fear was that Ava would end up brain-damaged or even dead.
The ambulance service call-outs were so regular for Ava that they didn't need to ask her address.
Vera says that her life prior to obtaining medicinal cannabis for Ava was one of constant stress, pain and anxiety.
"Every waking moment was consumed by it. I operated under constant fear and tension waiting for the next seizure. It was coming though you never knew when -- but as sure as the day it was coming.
Ava was having several seizures almost every day, with over twenty on a bad day. They may vary in extent and severity, but each one was an agonising experience, full of pain and terror."
"For Ava" has been published by Mercier Press and is on sale nationwide.
Vera says that she painstakingly compiled her journey with Ava and transferred it on to paper.
" I really hope that it will be something that will be there for other parents.
When Ava was diagnosed with her condition we would have valued a book about how people were getting on - more like a personal story."
Meanwhile, Ms Twomey has cautiously welcomed the signing into law of the Compassionate Access programme for medicinal cannabis.
However, she is concerned about the absence of chronic pain sufferers on the conditions list of the programme.
“These people cannot be abandoned. There are thousands of people suffering with chronic pain. They should be on the list. Chronic pain sufferers are furious. And I can understand that."
Ms Twomey spoke in the House of Commons in London last year where she explained the benefits of alternative medicine in treating conditions such as severe epilepsy.
The mother of three rose to national prominence during a three-year campaign to secure access to medicinal cannabis to treat Ava’s condition.
She will be at a book signing in Hodges Figgis on Dawson Street in Dublin tonight from 5pm to 6pm.