Hot Press has been talking to Vera Twomey about returning home with her eight-year-old daughter, Ava, after being forced to spend six months in The Hague where they were able to get the medicinal cannabis required to control Ava’s epileptic seizures.
“She’s delighted to be back in Cork with the rest of our family in time for Christmas,” Vera enthuses. “We got a phone call from Micheál Martin, who’s given us lots of help over the past six weeks, telling us we’d finally been granted a licence for the use of medicinal cannabis for Ava. Everybody who's been involved was very emotional; Luke Flanagan started crying when I told him the news!”
Unfortunately, it’s another Irish solution to an Irish problem.
“We still have to go to Holland every three months to access the medicine, which is extremely expensive,” Vera explains. “Here, Ava would qualify for the Long-Term Illness Programme for her epilepsy whereas over there we have to pay. We’ve found it tough, but other families simply wouldn’t be able to afford the flights and the accommodation and the cost of the medicine.”
In addition to Michéal Martin and Luke Flanagan, the welcome home committee that greeted Vera and Ava at Cork airport included Gino Kenny TD, Sinn Fein's Martin Browne, Fianna Fail's Andreas Moynihan and West Cork Independent Councillor, Michael Collins.
“They’re all great guys,” Vera resumes. “I’ve never said that cannabis cures anything. Rather, it might work for you if you get the chance to use it safely. Ava’s life was in imminent danger. There’s no way she could have kept surviving having up to 25 seizures a day. Upon my word, I have seen no negative side effects to my daughter, only progress. People talk about the risks to the developing brain, but without the CBD we’ve been getting I don’t think she would have seen this year out.”
Speaking to us a fortnight before the granting of Ava’s medicinal cannabis licence, Vera had been critical of the man who could have prevented their Dutch exile, Minister for Health Simon Harris.
“My family’s background would have been steeped in Fine Gael, so when I started all of this my impression was that they were the good guys. If I took such a serious problem to them, they’d act. But I learned a very, very hard lesson. At the first meeting with Simon Harris, they said they’d help us and I had no reason not to believe them, but we were lead an absolute dance from that first meeting in May or June 2016, which had taken eight months to arrange. The way I secured it was, looking back, an indication of the way it was going to go. I went on Jonathan Healy’s Newstalk radio show and said, ‘I’m at the stage where I’m going to have to stand outside the Dáil gates until Simon Harris will see me.' That’s how I got my first meeting with Simon. They told us, ‘Go and get a paediatric neurologist to oversee her care.’ I thought that might be achievable and tried over the course of a few months, but every paediatric neurologist I approached wasn’t prepared to apply for the licence. Then Minister Harris’ office told us in October 2016 that a GP could apply for the licence, so we approached our GP and he didn’t feel confident to apply for it. I was fortunate enough to be put in contact with Dr. Cathal Ó Súilleabhain, a supporter of medicinal cannabis, who started writing letters on our behalf. He’d send in what we thought was all the necessary paperwork, and the government would say, ‘We need another bit of information’. Then in February this year they said that a GP was not sufficient to be granted the licence. My husband, Paul, and I said, ‘But you told us a GP was sufficient’ and they denied that they ever did. That’s what drove me to walk to Dublin that time. We were at home with a very sick child, and no hope. They wouldn’t answer my emails or take my calls. Please God, no other family has to go through this because it’s soul destroying.”
When Vera moved to The Hague in August so that Ava could get her medicinal cannabis legally, the only correspondence Dutch officials received from their Irish Department of Health counterparts was a single email.
“They showed zero interest in finding out more about a treatment that could help dozens of Irish families,” Vera states. “The Dutch doctors were confused and appalled by what was going on. My husband went with Ava for the first appointment and said, ‘The neurologist and epilepsy nurse’s jaws were dropping further and further and further the more I told my story.’ The doctor said, ‘I want to hear every single detail from the beginning.’ He began at four months old when she was diagnosed with Dravet Syndrome, and noted all the medications she was given and subsequent interactions we had with the government. They think what’s been going on in Ireland is extremely cruel and backward. They have been so professional and compassionate. Why can’t we have that in Ireland rather than making vulnerable families jump through hoops?”
Vera blushes when I repeat Luke Flanagan’s assertion that, “Down through history, it’s taken people like Vera Twomey to change things. Politicians can do this, that and the other, but unless there’s somebody directly effected by it who speaks up, it never changes. She’s a hero.”
“That’s kind of him, but I don’t feel like a hero,” Vera concludes. “I’m just a mother who wants to do the best I can for my lovely daughter. She looks great in pictures, but has the mental age of a two-year old. That’s okay, though. We’re lucky she’s as good as she is and can now look after her as a family. Everybody is thrilled to have her back for Christmas.”