Vera Twomey pictured with daughter Ava Barry
A mothers love for her child is like nothing else in the world, but every once in a while you hear a story that transcends limits and boundaries and shows that maternal love is unwavering and will fight for justice no matter the cost.
That is true of Vera Twomey, a young mum from Aghabulloge in Cork, who has been challenging our legislation by simply trying to find a way to make her daughters life easier. Seven-year-old Ava Barry has Dravet Syndrome, which is a rare form of epilepsy that can trigger prolonged seizures – sadly for Ava the treatment options are limited, and a high level of care is required.
Vera has spent years trying to find a way to improve Ava’s quality of life and has been campaigning for her daughter to gain access to medical CBD – or to put it in simple terms medical cannabis.
But what is medical marijuana or cannabis?
According to the Epilepsy Foundation, the word marijuana usually refers to the leaves and female flowers of the cannabis plant. Medical marijuana is whole plant marijuana used for medical purposes.
Tetrahydrocannabinol, or THC, causes the psychoactive effects of “getting high.” While cannabidiol, or CBD, does not cause psychoactive effects but has shown positive effects on certain body systems and may potentially affect seizures.
In Ireland, we do not recognise this as a medicine or as a suitable form of treatment for patients – so to lobby the Dail and Minister Simon Harris – Vera completed a walk from Cork to Dublin last year to highlight Ava’s situation and public interest soared.
She eventually got to meet with Minister Harris along with her supporter Gino Kenny T.D and she hoped that this meeting would be the first step to enact change. Sadly it wasn’t to be and this summer Vera and her family had to make a heartbreaking decision to move Ava out of Ireland and to the Netherlands where she can access the treatment she so desperately needs.
It’s it’s almost 9 pm when I get to speak to Vera at her new home in The Hague. She has spent over an hour getting Ava to sleep but this is now her daily life. Even though she is very far from family and friends, she tells me that Ava is like a different person since they moved to the Netherlands.
“The medication is working extraordinarily well,” she says with an audible sigh of relief “It’s given her the opportunity to reach her potential. It’s changed everything for her she is becoming more independent, she is speaking, she is eating independently she is putting on weight, and she is growing”. The difference the medication has made for Ava is astounding, but it’s taken a lot to get to this place.
One of the main obstacles in their way has always been the need to establish effective treatment for Ava, and finally after abandoning any hope that Irish institutions could offer any relief – the Dutch and their liberal attitude towards cannabis as a cure – has given this.
“The doctors here in the Netherlands are delighted with her progress. They have a professional attitude to the medical CBD and THC; it’s an option here. It should be an option in any country. It should be the neurologist’s decision to decide. Pharmaceutical medicine has failed my daughter – she should have other options .”
It doesn’t exactly take a genius to work out why Vera ended up living in an apartment in The Hague, many miles from Aghabulloge. Medical cannabis has been allowed on prescription in the Netherlands since 2003 and cannabis research is blooming, with a clear focus on the scientific outcome, rather than on repression of cannabis use.
It is very frustrating for Vera who feels that an option is available but that she cannot get access to it in Ireland. Vera spent a lot of time researching the facilities and the care options available in the Netherlands, talking to those who had knowledge and experience with the programme. It was only after she had all of the information that they made the decision to move.
“ People in the Netherlands are proud of what they have achieved using medical cannabis for the treatment of rare forms of epilepsy; they are willing to share their knowledge and experience. When you have tried all the drugs you are left in a void and yet there is another realistic and safe option available, I don’t see why it can’t be explored.”
She raises a valid point, the medical community and our politicians are standing in the way of access for Ava. While it’s understandable that they would want to ensure the drug is safe and used correctly there are surely ways to do this without people leaving the country. But what other option did Vera and her family have?
“We were told our daughter was in immediate danger, her seizures were so bad that she was in imminent danger of death and at any time she could go into a seizure and not come out of it? For people like Ava who have the possibility of death facing them every week of their lives taking this in a safe and controlled environment is a necessary alternative.”
On the other side of the coin, one has to accept that doctors may simply not know enough about the drug to feel comfortable prescribing it. There has been talking of side effects to using it, and that obviously causes for concern.
Simon Harris ordered a report from the HPRA to review the scientific evidence about medicinal cannabis and, while provisionally supporting medicinal cannabis for certain conditions, the report was clear in how it saw cannabis.
It said: “To date, there is an absence of scientific data demonstrating the effectiveness of cannabis products. The safety of cannabis as a medical treatment is not well characterised.
In particular, there is insufficient information on its safety during long-term use for the treatment of chronic medical conditions, such as those for which there is a public interest.
For these reasons, and because most cannabis products available under international access schemes do not meet pharmaceutical quality requirements, they are not capable of being authorised as medicinal products.”
Minister Harris has been staunch in his approach, he believes there is not enough medical research done to support this type of treatment. Vera, on the other hand, has seen nothing but positives since Ava has begun the treatment
“People say there are side effects, but I can honestly say I have seen no negative side effects,” says Vera. “She is eating, she is sleeping, she is walking, and she is talking she is dancing and singing. Last week she heard a song on the radio and was happily singing along, this was something we could never have even dreamed of previously. Her progress is so visible”.
We also talk about concerns raised over possible psychoactive affects from the use of Medical THC, probably one of the leading reasons why this is yet to be passed as a medicine. Vera refutes this “When medical THC is used properly, and in the correct dose it’s fine Ava does not experience a high, it would be blatantly obvious if she did.”
A lot of people fail to remember that Vera is a mother not only to Ava, but to three other children. She has a six-year-old, a 5-year-old and a 2 and a half-year-old also and she has to split her time between Ireland and The Netherlands, as does her husband, Paul. The family hasn’t all been together is over a month, something that Ava finds difficult and the pressure is taking a toll. She hasn’t seen her grandmother in almost four months. Her support system, that is so tight, has been taken away from her.
“It’s the most beastly form of cruelty to be inflicted on any mother and father. I don’t just have one child; I have four children. I went home recently to bring my son to school it was his first day, and he needed his mother to walk him to the gate. But then I had to leave because Ava was missing me and my other children were missing Paul, my husband.” Vera herself has been very open about the struggle they have been through, recently sharing the reality of her journey on a Facebook post.
She shared the details of her daily routine which covered getting up at 7 am to administer the medication at the same time, whatsapping her children at home before they go to school, spending two hours getting Ava to sleep in the evenings. But the standouts of her day has to be the decision on if she can take a shower as Ava needs supervision or the night time after Ava is in bed.
“I come down to an empty, deadly quiet kitchen and sit down wondering every single night why I am bothering to sit here alone drinking more tea.Before I fall asleep at night I think the only thing stopping Ava from coming home is a signature on a piece of paper from a young man called Simon in Dublin”.
Vera tells me that the main concerns people have with medical cannabis are that it will be used recreationally. It won’t happen, the prescription is at the discretion of a doctor who will ultimately decide. Chronic Pain sufferers, MS patients, people with rare forms of epilepsy, these are just some of the people who can benefit from this being legislated and becoming a form of treatment.
“ I never believed it would come to this and that this country would not take action,” Vera reveals. ” I had faith in the politicians to do something about this, and they blew that faith out of the water and into the air. I believed that Fine Gael and the people who stood for this country would do something and they turned their backs .”
But most importantly Vera encourages people to use their voices:“You can be heard by contacting Simon Harris our Minister for Health or by lobbying your local TD. It’s important to focus on the lack of legislation in place we need this most importantly.Ava can’t come home until she is granted a license for her medication, and I don’t want other children to be driven from their homes.
It could be anybody’s child. Wouldn’t it be more sensible for the government to take action, to legislate properly safely and effectively for the medical use of cannabis in Ireland? If there is another little girl born in a few years time, at least they have options.”
As I hang up with Vera and go to the safety of my own bed in my own home, I can’t help but think of her, separated from her family living in a different country all in the name of love for her daughter.The only way this can happen is if some type of change is enacted in the law, we need proper and safe legislation put in place if this is going to be a form of treatment available to all citizens of Ireland.
There is a Go Fund Me campaign set up in aid of the family to help them as they stay in The Netherlands with no definitive end date.
Fund me Page : https://www.gofundme.com/qcn2a-ava-barry
Fundraiser by Vera Twomey