Cork mother Vera Twomey has decided to release footage of her daughter in the middle of a potentially life-threatening seizure.
Twomey and her husband have decided to make the trauma their 6-year-old girl endures public in their bid to get groundbreaking treatment approved.
Their daughter Ava has a rare condition that can see her suffer as many as 20 debilitating seizures a day, sometimes lasting up to half an hour. TV3 has broadcast the footage of one of her seizures today.
A preview of the clip can be viewed below.
Dravets Syndrome is a form of epilepsy that is drug-resistant but Ava's parents say there is one treatment that can help her, a form of medicinal cannabis.
In an interview with 3News Southern Correspondent Paul Byrne Vera said: "We have to get help for her now."
"The HSE said they would look towards Ava's application for medicinal cannabis as a priority, they'd look at it urgently. But their sense of urgency and our sense of it are not meeting up at all."
Ava was previously on a type of cannabis oil that dramatically cut the number of seizures. Over the course of a month last year, while on the treatment known as Charlotte’s Web, she only had seven compared to several hundred in the previous months.
A review commissioned by the Department of Health has recommended the use of medicinal cannabis for certain conditions but Vera says she still hasn't heard from anyone to approve them for the treatment.
"They just need to allow this child the medication that she needs because what we have isn't working and I have nothing else to give her," an emotional Vera told 3News Southern Correspondent Paul Byrne.
Vera has been pressing to have medicinal cannabis legalised here and has taken her campaign directly to Health Minister Simon Harris.
"They have the answer," Vera says, "we found the answer for them. All they need to do is to sign a piece of paper, communicate with the doctors we have, so we can get this medication for her, because if we don't get it, I've nothing else to give our daughter. Nothing else."
The family is due to have another meeting with Minister Harris on Thursday in Dublin but Vera insists time is running out for Ava.
"When she goes into a seizure you don't know what way she's going to be when she comes out."
"Her life is on the line. It really, really is. Everytime."
Ava’s story will feature on 3News bulletins today, at 5.30 on TV3 and at 7pm and 10pm on Be3.