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Mother releases harrowing video of daughter suffering seizures in bid to access medication

Vera Twomey is calling for her daughter to be given access to potentially life-changing medication.

WARNING. Some viewers may find the below clip distressing.

Source: TheJournal.ie/YouTube

A MOTHER HAS released harrowing images of her young daughter suffering from seizures to put pressure on health officials to speed up her access to potentially life-changing medication.

Vera Twomey released a video to Tv3 News of her daughter Ava suffering from a severe seizure.

Ava suffers from Dravet Syndrome, a debilitating condition which can see her suffer as many as 20 seizures every day.

Dravet Syndrome is a rare form of epilepsy that is resistant to drugs. However, Vera says that a form of medicinal marijuana can help her daughter.

Ava was on a medication called Charlotte’s Web – a cannabis extract – to help reduce the frequency of her seizures – which it did.

Charlotte’s Web contains very little THC – which causes the psychoactive “high” associated with cannabis use.

From the time Ava began taking Charlotte’s Web on 2 October until the end of that month, she only had seven seizures. This compared to several hundred over the course of other months.

But as medicinal cannabis is not legal in Ireland, Ava cannot use the drug, despite it reducing her symptoms on such a dramatic scale.

Vera has been campaigning for the past year to have medicinal marijuana legalised in Ireland.

A bill that would regulate the use of cannabis for medical purposes was passed to committee stage by the Dáil in December of last year.

As well as this, Health Minister Simon Harris announced earlier this month that he would establish a compassionate access programme for cannabis-based treatments for certain conditions.

However, Vera has said that she still hasn’t heard from anyone to approve them for the treatment.

Speaking to TV3 News, Vera called for the HSE to look at Ava’s case and speed up her access to the treatment.

“We have to get help for her now,” Vera said.

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.

Vera has met with minister Simon Harris in the past and is due to meet him again on Thursday. She pleaded with officials to speed up Ava’s access to the life-changing medication, saying that time is running out for her daughter.

“When she goes into a seizure you don’t know what way she’s going to be when she comes out,” she said.

Her life is on the line. It really, really is. Every time.

Read: “If we don’t get the legislation, we mightn’t have Ava for much longer”: A mother’s 150-mile protest

Read: ‘It’s like getting to know a new part of our daughter’: Cannabis bill passes first stage

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About the author:

Cormac Fitzgerald

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