Tag Archives: Vera Twomey


From top: Vera Twomey; Terry McMahon

Yesterday, Minister for Health Simon Harris granted Ava Barry, age seven, a special licence to be prescribed medicinal cannabis at her home in Cork.

Ava suffers from Dravets Syndrome and her parents Vera and Paul say cannabis oil, prescribed in The Hague where the family moved in June, has helped preventtheir daughter from having seizures.

Before going to the Netherlands, Vera took a well-publicised trip to Spain to secure the oil and take it back to Cork.

Terry McMahon writes:

Got a text late one night. Someone was looking for my number. Was it okay to pass it on? Anybody who wants my number can have it. Couple of minutes later the phone vibrated. Rarely answer the thing at night but this was different. She introduced herself. Voice unmistakable. Softer than I’d heard it on television.

But those circumstances were different. I wasn’t trying to rob her daughter of life-saving medicine. That was the first time I spoke with Vera Twomey. Five hours later we were standing on a security line waiting to board a plane to Barcelona.

Sitting in the airport that morning with Vera and her husband Paul should have been uncomfortable. Should have felt awkward. Should have had some kind of logic to make the three of us feel like we knew what the hell we were doing. But we didn’t. We were going on instinct.

A little girl was in a fight for her life against the gigantic ego of a Minister For Health. Nothing else mattered. That Minister refused to believe in miracles. Refused to believe in any power other than his own. Refused to recognize he was being given a lesson on the power of love by the parents of the little girl that he was intent on ignoring. But you don’t ignore Vera Twomey.

Paul walked us to the security gates. Me and his wife. Two strangers. A brief holiday is all. The camera hanging against my chest with the lens exposed. A tourist cliché. Paul said look after her. Out of earshot. A whisper. Humbling to shake the hand of such a man.

We were being watched as we went through security. Vera had been arrested a short time ago. Her arrest made headlines around the world. A mother’s love etched on the front page. They didn’t try to hide the fact that we were being watched either. But they didn’t know they were being watched too. The camera lens was exposed for a reason. The red light recording sound and vision virtually invisible. Hiding in clear sight.

We arrived in Barcelona. Already getting to know each other on the plane. No time for pretense. Everything from the heart. Bullshit free. We were staying in Las Ramblas. Iconic hotel. Perfect rooms. Barcelona beauty. We had less than twenty-four hours.

And every minute would be used. Some of the most remarkably humane people a soul could yearn to connect with appeared. Courageous, inspiring and generous beyond measure, these people put everything on the line to help others. And were reviled for it. Mistrusted. Criminalised. While our Minister sat on a fat salary for doing nothing.

Sometimes all it takes is a simple plan. Do the right thing. We all know what the right thing is. Most of the time. But Vera and Paul, and their incredible daughter Ava, had been repeatedly lied to by the Minister and his coterie of cowards. Then maligned. Then ignored. Then politely dragged away by police.

Vera needed a new plan. And she hatched it in Barcelona. The food tasted incredible that night. As did the wine. As did the air. That’s how bravery affects the senses. The opposite of how our Minister’s cowardice dulls them.

Back in Dublin next morning security was waiting for us. More of them than usual. Ready. I held back. Separated. Not to conceal anything. The camera was in full view. Except for the tiny red recording light. They searched her. They searched me. They questioned us. They could have been bastards. But they weren’t. They did their job. Meticulously.

But you could tell their hearts weren’t in it. Their hearts were bigger than this bullshit charade. They were mothers and fathers. They were in awe of Vera Twomey. Almost as much as I was.

That’s the impact Vera Twomey has. The impact Paul has. They make you believe corrupt politicians can be exposed. Because they just did it. They make you believe in the impossible. Because they just made it happen. They make you believe love moves mountains. Because it fucking does.

Terry McMahon is a homelessness activist, acting coach and award-winning film director. Follow Terry on Twitter: @Terrymcmahon69

Previously: Vera Twomey on broadsheet

This afternoon.

Leinster House, Dublin 2

Vera Twomey (pic 3) joins protestors to support People Before Profit TD Gine Kenny’s bill to legalise medicinal cannabis, currently being debated in the Dáil.

Vera says her daughter Ava’s sezures from Dravets Syndrome

Watch proceedings here

Top: Solidarity People Before Profit TDs Paul Murphy. Richard Boyd Barrett, Gino Kenny and Brid Smith talking to the media before the debate.

UPDATE:

More as we get it.

Update:

The Government has agreed to allow the progression of legislation to provide for medical cannabis to the next legislative stage.

The move is despite the fact that the Oireachtas Committee on Health recommended withdrawing Gino Kenny’s bill because of “fundamental flaws” in the legislation.

Minister of State at the department of Justice and Equality David Stanton said he was of the view that “if you have a very flawed piece of legislation, it might not be possible to amend it, perhaps it should be redrafted and resubmitted”.

However he said there seemed to be a consensus among TDs that the bill should proceed to Committee stage in the Dáil.

Medical cannabis legislation progresses to next stage (RTÉ)

Rollingnews

Vera Twomey and her daughter Ava in Tyesterdays edition of ‘The Algemeen Dagblad’

Vera Twomey and her husband Paul Barry gave an interview with a Dutch daily newspaper yesterday over their struggle to obtain medicinal cannabis for their daughter Ava.

Vera, Peter and Ava have moved to Holland to legally treat the symptoms of Ava’s dravet syndrome.

‘Nederland is écht onze redding, we blijven hier zolang als nodig is’ (AD)

Via Still Waiting Ire

Previously: Vera Twomey on Broadsheet

Luke Ming Flanagan (left) and Gino Kenny flank Vera Twomey at Dublin Airport in April after she obtained medicinal cannabis for her daughter Ava in Barcelona. Vera, her husband Paul and Ava are now living in Holland.

Further to the halting yesterday of the Medicinal Cannabis Bill from proceeding in the Dáil with bill sponsor Gino Kenny TD calling the chamber “a kip”…

Luke Ming Flanagan MEP writes:

Vera Twomey and family have been forced to leave Ireland and Gino Kenny’s Medicinal Cannabis Bill has been thrown out of the Dáil.

There’s something amiss! The system is failing to even look after itself.

Political parties like Fine Gael, Fianna Fáil and Sinn Féin have a great reputation for surviving. Their first instinct has always been to ensure that they do not introduce something that will jeopardise their power base. But now they have taken their eye off the ball.

While the FG/FF/SF brigade are a conservative lot at the best of times, it seems that they are allowing the machinations of the Dublin bureaucracy to run the show now – much to their own detriment.

The support for medicinal cannabis is overwhelming. When Vera Twomey walked to the Minister’s office in Dublin, form Aghabullogue in Co Cork, she had tremendous support.

School children came out and marched with her. School brass bands marched with her. Parents shook her hand. Everyone could see that she was fighting for the good of her child Ava. An honest battle, a humane request.

But now Vera, her husband Paul and their 4 children have left Aghabullogue and are living in the Hague in the Netherlands.

I spoke with Vera yesterday. She was extremely sad. Not because she has had to move away from Ireland, from her mother and her family. Not because she has been forced to set herself and her family up in a new country and a new culture (they are managing very well thankfully). None of these reasons.

Vera, like most Irish people, had faith in the ‘system’. She always reckoned that eventually common sense would prevail and that the political parties who run our country would see the light. Unfortunately she has been betrayed by the same system.

What has brought sadness to Vera was the news that Deputy Gino Kenny’s Medicinal Cannabis Bill was brought to a halt in the Dáil. Despite all the evidence presented to the Health Committee on medicinal cannabis, in face of the fact that country after country are making provision for medicinal cannabis, our TDs and Senators have let Ava and thousands of other Irish citizens down.

Those who suffer chronic pain, glaucoma, MS, arthritis, epilepsy and other ailments have been let down.

What amazes me is that the political parties have nothing to lose. This is not a contentious issue. Children in national schools have asked me about medicinal cannabis. They can see that it’s a humanitarian issue. How then has this come to such a sorry state?

The Minister and the other public representatives have not done their job.

They have abdicated their duty to a faceless institution called the Health Products Regulatory Authority (HPRA). We need politicians to represent the people of Ireland.

For as long as the Oireachtas is peopled with abdicators it will be a ‘Kip’.

Luke Ming Flanagan

Fight!

Previously: Vera Twomey on Broadsheet

Rollingnews

Free next Monday?

A fundraiser for Ava Twomey, whose case has highlighted the lack of availability of medicinal cannabis in Ireland.

Fiona MacGinty writes:

Party for Ava – fund raiser for Vera Twomey & Family, currently in the Netherlands where Ava, who suffers from Dravet Syndrome , a rare form of childhood epilepsy, is receiving medical cannabis treatment, denied to her here in Ireland. Tickets only €12 ! Great lineup of entertainment and a surprise guest! Tivoli Theatre [ 135-138 Francis St, Merchants Quay, Dublin 8]  July  18,  7:30pm

Tickets here

Previously: Vera Twomey and Ava on broadsheet

vera2veravera3

This afternoon.

Leinster House, Kildare Street, Dublin 2.

Vera Twomey and supporters on a a 24-hour sit-in to highlight the lack of availability of medicinal cannabis.

Last month, Ms Twomey walked from Cork to the Dáil, to highlight her daughter Ava’s need for THC-based cannabis oil to battle seizures.

Two weeks ago, she was stopped at Dublin Airport with oil purchased with a prescription in Spain for Ava, who lives with a rare form of epilepsy called Dravet Syndrome and suffers multiple seizures a day.

Minister for Health Simon Harris has asked a panel of doctors to draw up guidelines on how medicinal cannabis can be prescribed in Ireland.

Previously: Vera Twomey on Broadsheet

Top pic: ‘Our’ Aaron; Second Pic: Nial Neligan//Fweed, third pic: Rollingnews


Update:

Vera Twomey removed from Leinster House sit-down protest (RTÉ)

Screen Shot 2017-04-26 at 15.25.25

You may recall how, last Friday, Vera Twomey flew back to Dublin Airport from Barcelona, Spain, with THC-based cannabis oil for her seven-year-old daughter Ava who lives with a rare form of epilepsy called Dravet Syndrome and suffers multiple seizures a day.

Vera got the oil from a clinic in Barcelona with a prescription.

Customs officials confiscated the oil, which is illegal in Ireland, after Vera alerted the officials that she had the oil.

Earlier this afternoon, Vera and her husband Paul Barry, who live in Cork, spoke on Facebook Live explaining how they’ve been trying to get back the oil that was confiscated.

Paul said a person from the Department of Health eventually hung up on him.

Vera and Paul are now appealing for people to call, email or message Minister for Health Simon Harris at his constituency office and/or Dáil office and call on the State to return the confiscated oil.

There is also a petition calling on the State to do the same here

Vera Twomey (Facebook)

 

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from left: Gino Kenny,TD  Richard Boyd Barrett TD and Vera Twomey

This evening.

Molesworth Street, Dublin 2

A rally in solidarity with Vera Twomey and her seven-year-old Ava Barry who is suffering from a rare form of epilepsy called Dravet Syndrome.

Earlier this month, Ava’s mother Vera Twomey, walked  from Cork to the Dáil  to highlight her daughter’s need for THC-based cannabis oil to battle seizures.

Meanwhile, Minister for Health Simon Harriss this evening has asked a panel of doctors to draw up guidelines on how medicinal cannibis can be prescribed in Ireland.

Earlier: Free This Evening

Pics Niall Neligan

Screen Shot 2017-03-22 at 09.37.02

Next Wednesday, March 29, a protest will be held outside the Dáil in support of People Before Profit Gino Kenny’s Cannabis for Medicinal Use Regulation Bill.

The planned protest follows Vera Twomey’s walk from Cork to Dublin to highlight how her seven-year-old daughter Ava cannot legally access medical cannabis containing THC – the substance in cannabis which gives people a ‘high’ and is illegal.

Ava has Dravet Syndrome which causes her to suffer severe multiple seizures daily.

After walking to Dublin, Ms Twomey held a four-hour meeting with the Minister for Health Simon Harris, during which she was presented with several options.

On Sunday night, Vera explained what these options are in a Facebook live video and summed up where her family stands now.

She explained:

“The first option that we were given was the public neurologist. Now the public neurologist has stated that she’s not going to support or oversee the overseeing of Ava’s care unfortunately.”

“The second option would have been then the private neurologist who went to great lengths, I can only say great lengths to try and source an avenue for us to go down. We were offered the opportunity to travel to Canada – to meet with a consultant over in Canada who would prescribe and then possibly the overseeing of that could have gone on within Ireland. But I mean, unfortunately, for our family, our child is not stable enough – in spite of the fact that she’s made great progress – she’s not stable enough to go on a long-haul flight to Canada or anywhere else.”

Thirdly, the treatment abroad scheme was mentioned. The treatment abroad scheme again would obviously involve travel to some destination. It is not a possibility really for us, at this point, and then there was the question of the medicinal cannabis being an experimental treatment, I don’t know how accurate that is, that’ out.”

Four then, is the compassionate access programme which, I mean, I don’t whether you guys are as shocked as I am by this, but the consultants describe the compassionate access programme as completely unworkable and it’s not possible for any consultant to successfully put in an application for a patient because of the legal situation surrounding the THC part of the treatment. There won’t be any consultant, neurological or otherwise, from what I have been told by senior physicians that will be able to put forward this application, even if they wanted to.”

“Finally, the final option is legislation. So it seems that, after our meeting above in Dublin with Simon Harris and his people that the only alternative out there for people like us is to fight for legislation in this country because the neurologists are saying… and actually I feel very, I feel very sympathetic towards their situation because it is not the neurologists’ fault that they can’t prescribe this – it’s the law and it’s the law that has to change. And it’s the law that needs to change as urgently as possible.”

“I have to say to ye that I have a little girl here that’s badly, badly in need of help. And it’s a fright to god that there’s people on our own doorstep, there’s people all across Europe, there’s people all across the world getting access to medicinal cannabis for their families but that my child isn’t allowed to do that. That my child isn’t allowed access to something that’s, it’s a human right to have access to a medication to help your situation.”

“I would just like ye to know it’s very hard to come out on the computer like this and to be telling you all about it because I wish I had good news but I haven’t. And I just, I really hope lads that, you know, when it comes to the 29th of March, or when it comes to next month, or the month after that, that you won’t forget about Ava. Because we are really up against a very, very… we are up against the Government I think. And the whole thing is so wrong.”

“And I put up on Facebook, if you’d like to see it tonight, the Oireachtas report which was on a number of weeks ago where the HPRA were discussing the narrow guidelines and all the other information and the thing is: the evidence is out there. You know the evidence is all across Europe. It’s all across Canada, it’s all across the world: that medicinal cannabis works. But the Government don’t want to accept it. And I don’t know how we’re going to change it but just, would you please stay with us because, we really need the support of every one of ye out there or otherwise because I don’t think any of us are ever going to get what we need.

Please, feel free to share this and please, if ye can, I know there’s buses and everything being organised all around, in different places but the protest, the peaceful protest above outside the Dail is on the 29th of March [Wednesday], it’s going to be at 5pm but if you want to be there earlier than that, I’ll be there anyway, I’ll stand with everyone above there, I’ll be proud to stand with everyone above there, for the sake of our families and I, again, just the endless support that we’re receiving, we really, really appreciate it. Thanks everybody.”

Vera Twomey (Facebook)

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This morning/afternoon.

Inchicore, Dublin 8.

Vera Twomey with supporters on the final day of her 260km walk from her home in Cork to the Dáil.

Vera’s walk is a protest against decisions to restrict her seven-year-old daughter Ava, who has a rare form of epilepsy, from accessing cannabis-based medication.

Worsening health has forced Vera to finish her journey in a wheelchair.

Vera is expected to arrive at Leinster House, Kildare Street, Dublin 2 at approx 3pm today.

All welcome.

Previously: Vera Twomey on broadsheet.

Picture: Sam Boal/RollingNews.ie

Update:

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Vera Twomey with supporters on Kildare Street, Dublin 2 this afternoon

G’wan Vera.

Update:

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Vera Twomey and People Before Profit Gino Kenny TD on the plinth at Leinster House this afternoon.

Sam Boal/Rollingnews