Tag Archives: Vera Twomey

This morning.

Medicinal cannabis campaigner and author Vera Twomey went on Cork’s 96FM Opinion Line with PJ Coogan to discuss her book ‘For Ava’.

Fergal Barry writes:

PJ asked Vera “the question she was never asked before”. Hear her fondest memory from the last few years of struggle.

Meanwhile…

From top: For Ava, by Vera Twomey, published by Mercier Press; Garret O’Callaghan

Free Thursday?

At Eason’s on Patrick Street in Cork city, from 6pm.

Former radio and TV presenter Gareth O’Callaghan will launch For Ava – a book by Vera Twomey about her daughter Ava, who lives with Dravet Syndrome, and their fight to obtain medicinal cannabis in Ireland.

Ahead of the launch, Gareth writes:

….I first heard of Vera Twomey in early 2016 when she spoke on a radio chat show about her daughter’s chronic illness and how, despite repeated efforts to get her the medication she desperately needed to help Ava stay alive, the doors of power and authority continued to slam in her face.

But Vera refused to give up.

Her beautiful book, For Ava, has just been published and it’s in all of your favourite bookshops around Ireland right now.

If they tell you they don’t have it in stock, ask them to order it for you. You can go online and order of from a variety of websites including Eason.

Vera has paved the way for so many who will benefit from her heroic struggle. Her point-blank refusal to shut up and go away, like so many others would do and have done, has meant that her daughter is now seizure free and attending school each day, and engaging in many other activities that any nine-year old child would regard as normal.

Her book is filled with stories that will make you laugh and cry. The background to her story is also an accurate reflection of the daily struggles that so many of the frontline staff within the HSE have to endure: paramedics, junior doctors, nurses, and carers.

On one particular night, an ambulance had to be dispatched from Kilkenny in order that Ava could be taken to hospital in Cork following one of her worst seizures ever. That’s a 140-mile journey that took the paramedics almost three hours!

This is a book about a mother’s love and devotion to her daughter, and it’s also a book about a small child’s terrible illness and her family’s fight for medical justice.

It is beautifully written with tenderness and compassion, but the warmhearted anecdotes are never far from the ruthless, innate determination of one woman who refused to go away and accept that the health and wellbeing of her daughter Ava would or could ever be silenced by those in the corridors of power.

If there was only one book I would recommend you to buy this year, it would be this one; and if you happen to be passing Eason’s in Patrick Street in Cork this coming Thursday evening around 6.15pm, please drop in and say hello.

It will be my honour to launch this epic book, and to introduce Vera Twomey.

Cork Book Launch For Ava by Vera Twomey With Guest Gareth O’Callaghan (Eventbrite)

For Ava (Mercier Press)

Via Mercier Press:

When Vera Twomey’s daughter Ava was diagnosed with Dravet Syndrome, a rare form of epilepsy that causes multiple seizures a day, the family’s life was thrown into chaos. Where they hoped to find treatment and support in the medical system, they found only frustration. The only medication that would have any effect on Ava’s condition is a form of medicinal cannabis that was unavailable in Ireland.

Thus began the family’s fight to alleviate their daughter’s suffering and give her a chance at life. Faced with an intransigent system and political establishment, Vera’s campaign eventually culminated in her decision to walk from Cork to Leinster House in Dublin in protest to ask health minister Simon Harris for help in person.

For Ava tells the story of the campaign for Ava’s medication and the family’s move to the Netherlands in order to legally access the medication that would save her life. It also pays tribute to the people who helped Vera achieve her goal. Above all, this is a moving story about the lengths a parent will go to for their child’s health and happiness.

In fairness.

For Ava by Vera Twomey (Mercier Press)

Previously: Vera Twomey on Broadsheet

From top: The Transvaal Pharmacy in The Hague, Netherlands; Vera Twomey and Luke Ming Flanagan MEP

This morning, Taoiseach Leo Varadkar re-affirmed the position held recently by his Minister for  Health Simon Harris that the…

“…lack of availability of cannabis products in Ireland remains the most critical barrier to full implementation” of the [medicinal cannabis access programme] scheme”.

Mr Harris had added:

“Full establishment is dependent on the commercial operators making these products available in Ireland.”

Veteran legalise cannabis campaigner Luke ‘Ming Flanagan MEP responds:

This statement does not add up. The experience of Vera Twomey has not been that there is a problem of availability. The problem is one of importation and delivery.

As most people know Vera Twomey has acquired a license for medical cannabis for her daughter Ava. In order for Vera to get the cannabis based medicine either herself or her husband must travel six times per year to the Transvaal clinic in The Hague.

The journey involves an early morning flight from Cork to Amsterdam followed by a train journey to their destination city. The schedules mean hanging around for hours on end waiting for the return flight home.

Not the end of the world you might say. True. Far better than having no access to the medicine. Very true. Are these journey really necessary though? Definitely not. Surely the medicine can be delivered to their local pharmacy.

Well anyone who knows Vera will know that if there is a route to make this happen then she will find it.

I regularly talk to Vera on the phone. I got a phone call from her in the last fortnight. She rang me to inform me that there is already someone getting delivery to the Island of Ireland from the Transvaal clinic in The Hague.

As always with Vera she used this information to unlock a solution to her own particular situation. She established that a pharmaceutical distribution company are already bringing it here. I say here rather loosely. It is being delivered to Northern Ireland.

She has contacted the company in question and asked could they the provide the same service into the Republic of Ireland. No problem was the answer. However it would have to be agreed to by the HSE. Simple. Well so it should be.

However rather than helping her they are in fact stonewalling her. She is waiting and waiting to hear what action the HSE have taken to facilitate the medicines delivery.

Why does the state allow this to happen?

Why when there is simple solution at hand do the HSE not act upon it?

If the people involved in taking care of our health administration don’t care about the well being of those they get paid to take care of then they shouldn’t be let near the job.

I have three daughters myself. As anyone knows raising children is hard work. When one parent has to go away for the day it becomes a little bit more challenging. When one has a child with special needs that challenge is even greater. The state needs to get its act together now.

Deliver the medicine. It’s not rocket science. Minister Harris needs to stop hiding behind the “lack of availability”. It’s simple not true.’

Luke ‘Ming’ Flanagan

Previously: Vera Twomey on Broadsheet

Medicinal cannabis activist Vera twomey (above) and Minister for Health Simon Harris (top)

An open letter to Minister for Health Simon Harris from medicinal cannabis activist Vera Twomey, whose daughter Ava, a sufferer of Dravet Syndrome, secured a licence to use the oil to control her seizures.

Dear Simon,

Hi, it’s Vera here –  Ava Barry’s mum. Just a quick update. Ava’s doing great, bit of an ear infection this week, but she’s rallying again, thank God.

As you know, I’m from a small little village called Aghabullogue [northwest County Cork]-  fierce Fine Geal country, actually you would get a great welcome if you ever decided to pop by.

Anyhow, I just wanted to let you know that down our way ordinary people like us are doing their research and all around the area people are using medical cannabis to heal their bodies and control and cure many serious conditions.

It’s great that people are able to find research and educate themselves on medical cannabis, isn’t it?

It would be of great benefit to all of us if our consultants and doctors were offered the opportunity to learn about medicinal cannabis its benefits and the appropriate dosage, etc. and we could work together for our better health.

I was wondering are you planning on doing anything of real value for us regarding this matter?

Aghabullogue is a fantastic spot you know but it’s very small i’m just pointing that out because there are communities all over the country much bigger than ours where people are using medical cannabis to improve their lives in massive numbers.

Remember I told you on the phone that time that you could do something really great for the people. I wonder were you listening or were you just annoyed to have to talk to that cheeky mare, aka me. well. Ether way you still could. I hope you decide to do so. We would be very proud of you to do so.

I also just wanted to let you know ill be calling in to see you there in the Dail in November with a few friends of mine Hannah Deacon Callie Blackwell and Danielle Davies.

They are great women Simon and help us, if you imagined I was firey, you’re not going to know what hit Dublin when these ladies arrive with the stories of how medical cannabis has saved their children’s lives.

So we hope we will see you there that day for a frank discussion. As they say it’s good to talk.

Seems to me it would be really a great plan to move the debate on medical cannabis back into the dail chambers for us and leglislate so ordinary people can get the medical support they need.

We will look forward to seeing you in November.

Best Regards,

Vera

Vera Twomey (Facebook)

Previously: Meeting Leo

A two-minute highlight from Thursday’s Broadsheet on the Telly.

Cork-based cannabis oil activist Vera Twomey recalls meeting Taoiseach Leo Varadkar at the ‘People of the Year’ Awards last April.

Vera secured a cannabis oil licence for her daughter Ava, who suffers from Dravet Syndrome, after a three-year long battle.

The part of Vera’s award speech directed at Mr Varadkar was cut out by RTÉ in a highlighted tweet from the station on the night, but can be watched here

Vera appeared on the ‘telly’ with brain tumor sufferer Kenny Tynan, who, despite securing a licence, has been told costs obtaining the oil (approx €5,000 every three months) will not be reimbursed.

Full show here.

Thanks Dermot Bohan

Above from left: Gino Kenny TD, Vera Twomey, barrister Niall Neligan, Kenny Tynan and and pro-medicinal cannabis GP, Dr Garreth McGovern

This afternoon.

Leinster House, Dublin 2

The launch of [legalise cannabis  group] Fweed’s ’21st Century Approach to Regulating Cannabis’ by law academic Niall Neligan with independent TD Gino Kenny, activists Vera Twomey, Kenny Tynan and medic Dr Garreth McGovern.

At 3pm, parents of children, and individuals, in need of medicinal cannabis are invited to meet TDs in the Dáil, Noreen O’Neill,  whose son Michael suffers seizures from bilateral frontal polymicrogyria, will describe her struggle to get oil for him.

Fweed

Yesterday: A Chance To Talk About Medicinal Cannabis

Previously: Vera Twomey on Broadsheet

Update:

G’wan the Vera and Kenny.

More as we get it.

Hannah Deacon?

Callie Blackwell?

Earlier: It’s Oil Right, Innit?

Meanwhile…

Yay.

UPDATE:

Today.

Westminster, London

Cork mum Vera Twomey, who secured a licence for medicinal cannabis for her daughter Ava,  will speak in the House of Commons this afternoon..

Vera became friends with Hannah Deacon, whose six-year-old son has severe epilepsy, when they both lived in Holland to receive medicinal cannabis for their children, as they lived on the same street.

Yesterday, Ms Deacon was told her son Alfie Dingley would be granted a licence for medical cannabis – becoming the second child with epilepsy in the UK to be granted such a licence.

Via Vera Twomey (Facebook)

Related: Home secretary announces review into medicinal cannabis use (The Guardian)

Previously: Vera Twomey on Broadsheet

A Facebook post from Vera Twomey yesterday

Vera Twomey received a People of the Year award last week for her successful campaign to obtain medicinal cannabis for her daughter Ava, a sufferer of Dravet Syndrome.

Ms Twomey has claimed she confronted Mr Varadkar before the awards ceremony about the passage of legislation to make it easier to access cannabis oil.

Describing him as “rude”, Ms Twomey said the Taoiseach told her he could not support the bill as he had not received promised amendments from its sponsor, Solidarity–People Before Profit TD Gino Kenny.

Ronan Emmett writes:

Is he a liar or not? This cuts to the very heart of our democracy and people like him get away with it when good people say nothing.

Is Leo a liar? If he is he needs to go. This isn’t funny anymore. It’s time for some radical action.

Vera Twomey (Facebook)

Previously: And It Stoned Me

Vera Twomey on Broadsheet