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Dravet syndrome

"If we don't get the legislation, we mightn't have Ava for much longer": A mother's 150-mile protest

Six-year-old Ava has a rare condition called Dravet syndrome. Her mother Vera wants legislation approved quickly to help her.

A MOTHER FROM Cork is walking to Dublin to try to persuade the government to approve legislation that she says would save her six-year-old daughter’s life.

Vera Twomey’s daughter Ava has a rare condition called Dravets syndrome, an extremely rare, drug-resistant form of epilepsy which at its worst, causes up to 20 seizures in a day.

Vera Twomey and her husband Paul Barry believe there is one thing that can help their daughter: cannabidiol (CBD) oil, a form of medicinal marijuana.

Speaking on Cork RedFM’s Neil Prendeville Show, Vera said that although a protest had been suggested to her before, she wasn’t quite ready to take such extreme measures.

But after her daughter suffered a particularly bad seizure last night, and having been frustrated with the lack of options for her daughter, Vera said she “couldn’t afford to sit around any longer”.

“I’ve tried everything else, I’ve tried Facebook, phoning them emailing them, other people getting in contact with them, the petition is there.”

If we don’t get legislation in shortly to help Ava, we mightn’t have Ava for much longer.
I’ve my coat, I’ve my phone, I’ve a bottle of water, and a couple of pears.

One listener called in to express concern over Vera’s welfare during the journey – to complete it in a week, Vera will have to average 30 miles a day.

“I don’t know how far I’ll get. What Ava goes through everyday walking a few miles is not even close to the suffering she goes through.”

Cork to Dublin Google Maps Google Maps

Charlotte’s Web

Ava was on a medication called Charlotte’s Web, which is described as a purer form of cannabis oil to help reduce the frequency of her seizures – which it did.

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.

This is a battle that Vera has been struggling with for the past year, and last night, she says it came to a head.

“Last night Ava had a violent seizure, and I’m convinced that Ava could have been in a very serious way if it wasn’t for the benefit of almost a month completely free of seizures to fight off the attack last night.”

I can’t wait any longer. I can’t sit around and wait for Simon Harris and his team to decide that they’re going to implement legislation to help Ava treat her seizures.

“So as a form of protest, I’m walking to Dublin. I started this morning at 9.30… and I’m on my way to Mallow, and I’ll get to Dublin whenever… God, I don’t know when I’m going to get there.”

shutterstock_426727075 Charlotte's Web is a high cannabidiol, which is marketed as a medical cannabis under state laws. Shutterstock / Swapan Photography Shutterstock / Swapan Photography / Swapan Photography

Why the protest

“I’m asking Simon Harris to listen, and I’m asking the government to realise that we don’t have the time to wait around.”

“Last night, she was wailing and crying in pain after it happened. It’s time we did something else to get people to listen. This is what I’ve decided to do, I don’t know what else to do, I’ve tried everything else.”

Ava embarked on the journey without planning her route or accommodation, and says “I’ll find somewhere to put my head”.

When asked if her daughter knows of the lengths her mother is taking for her, Vera replied:

“Ava is only interested in hugs and love and affection.”

Ava doesn’t understand that when I left the room today, I might not be back for several days… but she knows her mummy loves her and that she’d do anything for her.

“I know that anyway, you know.”

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