Sunday 22 September 2019

'I think the Government would love me to go away' - reluctant cannabis activist Vera Twomey

The Long Read: Vera Twomey - still battling to have cannabis legalised for medicinal use - has written a book about her struggles and those of her nine-year-old daughter. She talks to John Meagher

Extraordinary impact: Vera Twomey and Ava pictured at their home in Cork. Photo: Darragh McSweeney
Extraordinary impact: Vera Twomey and Ava pictured at their home in Cork. Photo: Darragh McSweeney
Ongoing battle: Vera Twomey during a Legalise Medicinal Cannabis Rally at Leinster House, Dublin in 2017. Photo: Gareth Chaney
Vera Twomey with her husband Paul Barry at Leinster House. Photo by Tom Burke
Vera with Gino Kenny TD during a press conference on their campaign for medicinal cannabis. Photo: Gareth Chaney
John Meagher

John Meagher

It was supposed to be one of the most special nights of Vera Twomey's life - but the Taoiseach made her cry. It was the occasion of the Rehab People of the Year Awards in April 2018 and Vera - who had campaigned tirelessly for the legalisation of medicinal cannabis to help her daughter and others - saw Leo Varadkar and his assistants enter The Round Room of Dublin's Mansion House just before the ceremony got under way and she decided she had to speak to him.

"I went up to him and asked him when they were going to pass [Solidarity-People Before Profit TD] Gino Kenny's bill [on medicinal cannabis] and he sort of swatted me away," she says.

Please log in or register with Independent.ie for free access to this article.

Log In

"He said there were problems with it and he couldn't talk to me because he was under time pressure."

When she returned to her table, tears were welling in her eyes. The RTÉ newsreader, Eileen Dunne, was among those to comfort her. "I think she was a bit worried about how my mascara might look on television when I went up to get the award. But his attitude to me was just so upsetting. I had been fighting for [daughter] Ava for years and here was the very man who could do something to help me and others in this situation and he didn't want to know.

"I probably wouldn't have mentioned him in the acceptance speech, but I was so upset that I had to."

The RTÉ footage of the event heavily edited that segment, but the so-called uncensored version is on YouTube and it depicts an uncomfortable looking Taoiseach sitting there while Vera castigated him and his government over their inaction.

By the time she had finished, she had received a standing ovation from the room - from everyone, that is, except for Varadkar, who remained sitting.

She got to talk to him again, after the ceremony, and he was much chattier. But, then, Vera points out - the cameras were on them.

Ongoing battle: Vera Twomey during a Legalise Medicinal Cannabis Rally at Leinster House, Dublin in 2017. Photo: Gareth Chaney
Ongoing battle: Vera Twomey during a Legalise Medicinal Cannabis Rally at Leinster House, Dublin in 2017. Photo: Gareth Chaney

"I think this government would just love me to go away," she says. "But that's not going to happen. I'm fighting for Ava because I'm her mother and that's what I have to do. And I'm going nowhere."

Vera means what she says. Her forthcoming memoir, For Ava, will ensure that her story reaches a wide audience. It documents the heart-rending story of her attempts to have cannabis legalised for medicinal purposes - a battle she is still fighting.

Vera Twomey with her husband Paul Barry at Leinster House. Photo by Tom Burke
Vera Twomey with her husband Paul Barry at Leinster House. Photo by Tom Burke

Conventional medicine failed time and again to help ease Ava's condition but cannabis has been transformative in helping to improve her quality of life.

But despite the extraordinary impact it has had in almost three years, Vera's husband Paul has to travel to the Netherlands every 12 weeks in order to collect a new consignment on prescription. Being able to simply get the cannabis medicine in her local pharmacy would put an end to the four-yearly visits, but such a possibility remains a pipe dream.

Today, sitting in the kitchen of her home in rural Co Cork, not far from Macroom, she shows Review the small dosages of CBD and THC oils that Ava takes orally twice a day, morning and night. Both are derived from the cannabis plant, with the latter the more potent of the two.

"Ava would spend every four or five months of each year of her life in CUH [Cork University Hospital]. We introduced Charlotte's Web CBD oil to Ava in October 2016. We're now in August of 2019 and, touch wood, we're now three years without being admitted in an emergency to any hospital in the country. That's your evidence. That is life changing."

Vera is adamant that cannabis has helped to save Ava's life. "I hate to say it, but she would not be alive today without it."

The THC oil (which is derived from the psychoactive component of marijuana) is especially effective in stopping Ava's seizures.

Vera with Gino Kenny TD during a press conference on their campaign for medicinal cannabis. Photo: Gareth Chaney
Vera with Gino Kenny TD during a press conference on their campaign for medicinal cannabis. Photo: Gareth Chaney

"If Ava has a seizure, I'd give her this much" - she withdraws a tiny amount of the liquid using an oral syringe - "and her seizure would stop within 10 to 12 seconds. Maybe 15. What happens after that? She has a little sleep - maybe 20 minutes, knowing Ava - and then she'd be up and out again."

A conventional medicine that she had previously been prescribed would bring the seizure to a halt, but "Ava would be comatose for 10 hours and then when she woke, she wouldn't be able to stand for another 10 hours.

"This," Vera adds, holding up a tiny bottle of THC oil, "is what all the drama is about."

Ava is Vera and Paul's first child. She was born in November 2009 and, at first, she seemed a perfectly happy, healthy baby. "She'd sleep and eat and cry and smile," Vera says. "It was beautiful. The world was our oyster for a couple of months."

And, then, everything changed. Vera brought Ava for a routine doctor's appointment. "It was later that day when the first seizure started. It was at 8pm and it lasted 45 minutes. It was so frightening that I cannot really remember anything about being there. I just remember it being violent and ongoing. I remember calling Paul and my mother, but that's it."

Dravet syndrome

She sensed straight away that Ava had epilepsy, but it took time before the variant, Dravet syndrome, was diagnosed. It was news that turned Vera's world upside down - and that of her husband, Paul, too.

"I'd never heard of it before that moment and nobody seemed to know much about it. We were told that Ava would never talk and never walk and she wouldn't live past three years old. It was devastating and yet there was something in me that decided I wasn't just going to accept what we were told."

She remains angry about how the consultant delivered the news.

"I said to her, 'How can you tell me all the things that Ava won't be able to do. Why can't you tell me what she can do'. Why just deliver all the negative things, without looking at the positives that might improve the situation?

"I don't want to sound overly dramatic, but maybe it's the brutal way that we were given the diagnosis that lit a fire under me. The terrible fear is that in your devastation, you'd accept what they tell you and not see the strength your child has within them. You can't know what's inside their spirit or what they have to keep going. When Ava needed me, I was able to find it inside myself to be there to stand up for her."

The early days were frightening and lonely. "There was nobody. It was so bad, you couldn't understand it. We had the child seizing. We had each other at home watching her seizing. We had doctors giving her no hope. We had no information. They told us she was going to die by the age of three. Everything we had hoped for her had fallen away - we had to build a new life but we had to build something that nobody else had built before.

"When she was diagnosed, we didn't know there were thousands of seizures ahead of us, we didn't know there were heart attacks and comas we would have to deal with, we didn't know that there would be [Minister for Health] Simon Harris and his civil servants ahead of us."

At first, the couple tried every medicine that was prescribed to them.

"For a while, we trusted the doctors and the medications, and we felt that if one medication didn't work, we'd try another one. But the medications were failing and we were getting desperate."

It was then that she began reading online about how medicinal cannabis was helping other children with Dravet syndrome. "I had thought that cannabis was just something that was smoked recreationally. When I first started hearing about it being used for this condition, I thought, 'That can't be right'.

"But then I heard about this child, Charlotte Figi, who had Dravet and I'm looking [online] at this beautiful child and she's out riding her bike and having as normal a life as she can. And it's because of cannabis.

"And then I thought, 'Why don't we have any information about this in my country?' I quickly came to the realisation that it's never talked about because the whole system of medication in Ireland is pharmaceutically driven.

"Around that time, a senior consultant in Dublin said to me, 'If it was my daughter, I'd have her on the CBD right now'. And I thought, 'I have to get Ava on this'."

And that's when the real trouble started. Not only was the Department of Health refusing to accede to Vera's request that cannabis be made available for Ava, but she was told that it was illegal to import the stronger TCH variant.

"Look around you," she says. "I'm just an ordinary person. I wanted a simple life here. I never wanted to be on the radio or writing a book. But my daughter needed me and I was going to do anything for her - and that's why I walked from here to Leinster House. I could think of no other way of getting attention for her."

The walk she mentions was in early 2017 from her home in Aghabullogue to the heart of Dublin, a distance of 240km, but she didn't have to do it alone.

"It was incredible the way people connected with me," she says, tears in her eyes. "Whether it was a small village in rural Ireland or the Liberties in Dublin, people said to me, 'Go on, Vera - we're with you!'." Vera Twomey's pilgrimage attracted huge media attention and nationwide interest.

Eventually, after Vera and Ava spent months in the Hague in 2017 to access treatment, Ava was indeed awarded a licence for medicinal cannabis. Mother and daughter came home.

And yet, the trouble went on. Even then, initially the Government refused to fund Ava's medication. Further lobbying secured a change of mind on the funding, but the need for the family to physically travel to the Netherlands remains.

What also remains unresolved - and what Vera continues to battle for - is the passing of broader legislation for medicinal cannabis in Ireland, which would mean Ava and other individuals could access it legally and without barriers.

Pilot programme

The Government this year also started a pilot programme for medical cannabis which means doctors can prescribe it for certain conditions.

But Vera did not feel Simon Harris was taking Ava's case fully on board.

"When we got to meet him for the first time, we were completely plámásed," Vera says of the Minister. Simon was saying 'Oh, Vera - I understand. I'll do the best I can'.

"If he wanted to help Ava, he could have done it."

It's a sentiment she reserves for the Taoiseach, too. "We always voted Fine Gael in this family," she says. "Never again."

And yet, there were friendly faces in the Oireachtas. "Gino Kenny has been really great for us," she says. "Our backgrounds are like chalk and cheese but he's really fought for Ava. It didn't matter to him that we weren't in his constituency - that we lived a long way away. And others have been really supportive, too. I'm sure there are sympathetic people in Fine Gael - maybe they're afraid to speak up."

For now, Vera and Paul continue to venture to the Netherlands every three months. "It's become a part of our lives now, and it doesn't need to be. It could be so much simpler."

Ava turns 10 in November and although she is tired and in bed on the afternoon that Review visits, Vera says she is usually up and about in the garden and will, hopefully, soon learn to ride a bike. She goes to a special class in a school in Macroom and her mother says she adores it. "You can see it in her face every morning."

Despite the pain that Vera Twomey has experienced, her spirit seems irrepressible. It helps that her three youngest children - Sophia, Michael and especially the little livewire Elvera-Mae - keep her on her toes. "They told me not to have any more children." She didn't listen.

"I wrote the book for my kids so that when they are older, there will be a written account of what happened and what we did and why we had to do it. And I want them to understand why mummy was on the phone all the time, or why mummy was on the news. I want them to know how brave their sister is and how much she fought, and to look back and see what a great person she is."

Indo Review

Editor's Choice

Also in Irish News