Photograph courtesy of Vera Twomey
At the beginning of March this year, Vera Twomey walked over 250km from Cork to Dublin, for the second time, in an attempt to persuade the Oireachtas to approve legislation that will allow her seven year old daughter, Ava, and other patients the use of cannabidiol (medicinal marijuana). Ava has a rare epileptic condition called Dravet’s Syndrome and can have up to twenty seizures a day.
In my last article about Vera, I referred to her as “The Lioness”; a woman who “rises above the rhetoric”. A month on, I have been thinking about how Vera, as a woman and as the mother of a sick child, really feels.
Like me, I’m sure there were thousands of people, caught up in the story of this powerful woman who was walking to the capital city to confront the Minister for Health head on. Gathering followers along the way, determined to do anything in her power to help her child. Characteristics that great literary or movie heroines are made of.
But, what happened after the walk? What happened to Vera and her family when we all went back to our normal lives? It is all too easy for us, as by-standers, to get caught up in the power of the story. So, I thought I would ask her about how she felt, both as a woman and a mother.
Interview with Vera Twomey: Monday, 3 April, 13.08pm
I spoke to Vera on the phone. I asked her how she felt about having to both campaign for better medicinal treatment for Ava along with caring for Ava and for her other children. She explained that she gets on with her day to day life and tries to cope as best she can.
“If I think about it, tears will start to flow”.
Vera spoke about the support she and Gino Kenny, TD, had received on the walk. People from all walks of life came out to wish her well. It seems that the message Vera was carrying from Cork to Dublin resonated with a huge percentage of Irish people. Vera spoke about how well-wishers said ‘it could be me; it could be my child”.
The losses attached to being a full time carer and a campaigner
As adults, the majority of us, have watched a loved one suffer through illness. We may feel helpless, unheard and isolated. We place our faith in others to guide us through and decide upon the medical care that our loved ones need. We may feel we have no control.
I thought about Vera’s situation. Not only is she looking after a little girl who needs a lot of extra care because she has a serious medical condition, she and her husband are not adequately resourced to do so in this country. Dravet’s Syndrome is a rare condition. There is very little support available to the family in the form of groups and they have the added job of campaigning for access to medicinal cannabis which they believe will significantly improve the quality of their daughter’s life. Vera spoke about how caring for a sick child has affected her social interactions.
“Life becomes small. We have no social life because we aren’t reliable to be able to come to an event that we might be invited to. And people understand that because Ava is very sick. There is a lot of isolation and this can be damaging to your own well-being”.
The meeting with the Minister for Health
Vera spoke to me about the proposals and options discussed with regards to Ava’s future care. She explained that some proposals were not an option because Ava cannot travel abroad for treatment because she is too ill. I asked her how she felt about being expected to travel abroad for treatment,
“My daughter should be treated in Ireland . She is a very sick child. It’s as if Ava and people like her are not important enough to be treated in Ireland. In their own country.”
Vera spoke about the “Compassionate Access Program” that was offered.
According to the European Medicines Agency,
“Compassionate use is a way of making available to patients with an unmet medical need, a promising medicine which has not yet been authorised (licensed) for their condition.
A medicine can be marketed in the EU only after it has been authorised. However, it is sometimes in the interest of patients to have access to medicines before authorisation. Special programmes can be set up to make these medicines available to them under defined conditions. This is known as ‘compassionate use’.
Compassionate use programmes are co-ordinated and implemented independently by EU member states.”
In Ireland, the compassionate access program allows patients who suffer from MS, certain forms of epilepsy and cancer to be treated with pharmaceuticals derived from cannabis. Epidiolex was offered to Ava as a trial two years ago. Vera explained that they were excited at first when they heard about this option. However, when they researched the trial results, Vera said that one child had died during the drug trial and that the side effects from Epidiolex, according to Vera, are very severe. They can include sleep disturbance, extreme loss of appetite, drooling, nausea, change in behaviour and other side effects. Ava has been prescribed eleven anti-epileptic drugs in her short life and none of them have been successful in treating her condition.
Tetrahydrocannabinol (THC) or medicinal cannabis is illegal in Ireland under the ‘Misuse of Drugs Act’ because it is derived from the cannabis plant. According to Vera, under the compassionate access program, Ava and people who suffer from chronic illnesses like her, cannot access this treatment in Ireland unless legislation is changed.
“Legislation is the only option and it’s the right option. To put the decisions into the hands of consultants who have the proper authority to administer the drug. They can decide if the person is a suitable candidate.”
After the meetings
Vera spoke to me about how she felt after the meetings were over. She said she sat on the steps outside the Buswell Hotel in Dublin and cried on the street. She was humiliated.
“There was no dignity in how I was treated. I conducted myself as best I could. I was open and reasonable.”
She then went on to tell me that a Garda approached her with a cup of tea and offered her some kind words. Throughout our chat this afternoon, Vera spoke about the kindness and compassion of the general public. How ordinary people have showed her and Ava support and how this helped her realise that other people needed to be heard just as much as Ava did.
The effects on a family
Vera has a loving husband and three other children, Sophia, aged 5, Michael, aged 4 and Elvera-Mae, aged 2. My own daughter is also two years old so we spent a few minutes giggling and regaling stories of their toddler antics. I asked Vera how she felt about being away from her other children whilst campaigning for Ava.
“I am trying with all my soul to get what Ava needs but I can’t sacrifice my other children. If we had to go abroad, the family would be divided.”
We spoke about how fast our children grow. How every day, a toddler learns something new, speaks a new word, scribbles on a new wall. These are things a lot of us take for granted. Listening to Vera, I realised that she was missing some of these developmental moments in her other children’s lives because she is not adequately supported and she feels forced to campaign for adequate health care for her child.
My own thoughts
Whilst listening to Vera, I was struck at how balanced and articulate she sounded, given the fact that her life must be filled with stress and worry.
Whilst we were talking, her landline rang. It was a journalist. Vera was explaining the next walk for Ava and others who would benefit from medicinal cannabis. I thought about how many balls this woman must be juggling in life yet she still remains diplomatic. She strikes me as being an intelligent and compassionate person. A true and honest leader.
I thought, “How would I feel if I were in Vera’s shoes?”. If my child were desperately ill and every avenue pursued was blocked? If every time I articulated my points with research and back up, my voice was not heard by those who could instigate change? I wondered if I would have the personal strength to keep going?
I admire you Vera, for your honesty and your sincerity. I admire your power as an intelligent woman and as a mother.
I hear the strength of your message.
I hear your voice.
How to support Ava and Vera
A walk is being held in Cork on 22 April at 2pm – “Justice for Ava and justice for all”.
Visit the petition page at:
Support Vera via Facebook: “Hope for Ava”; “Vera Twomey”