What lengths would you go to for your child if you believed her life was in danger? Would you consider breaking the law? Challenge the Government to make legislative change? Or walk 200km to put the media spotlight on her story? That’s exactly what Vera Twomey was prepared to do, all in aid of saving her daughter… Ava.
Interview by Nadia Duncan
You may have already heard about the Supermum who made the news headlines in 2017 by walking from her home in County Cork to Leinster House in Dublin, to beg Health Minister Simon Harris for help in accessing THC (a form of medical cannabis) which is available on prescription in several other European countries, but not in the UK and Ireland. The gently-spoken, mum-of-four confesses that sharing her family’s heartbreak and pain with the world was the last thing that she would ever have envisaged doing, but that desperation and a ticking clock on a countdown to your child’s life expectancy are powerfully strong motivators for a parent.
Vera explains, “I never wanted to go public with our story, but in the end my husband Paul and I did what we had to do, and any parent would have done the same. Like all first-time parents when Ava was born we had so many hopes and dreams for her future and were determined to do everything right. She was born a healthy weight and we were living in a bubble of happiness for the first few months… until one night she just started to seize.
“It was so violent and seemed to last for an eternity. Terrified, we rushed her to the emergency room, and so many other times after, beginning a treadmill of seeing doctors and constant hospital appointments. Her bloods were sent away to Glasgow and I remember thinking that if her blood was being sent out of the country for tests, that there must be something very wrong. Unfortunately, I was right to fear the worst and a few weeks later when Ava was four months old we got the diagnosis.”
“The neurologist told us that Ava would never walk, never talk, and would be confined to a wheelchair for life.”
The results showed that Ava had a muted gene and, more specifically, she had a type of epilepsy known as Dravet syndrome. Vera recalls, “Bluntly, the neurologist told us that Ava would never walk, never talk, would be confined to a wheelchair for life and we would most likely have to consider residential care for her when she was older.” Dravet syndrome is catastrophic to the mental development of young children. One in every 165,000 are diagnosed and many do not live beyond their third birthday. Vera continues, “As I was listening to all this, it was like a fire lit within me. I was determined to do whatever it took, there was no way we were giving up the fight for Ava. When we left the room in the hospital that day Paul and I vowed that if that prediction became true for Ava, it would certainly not be for the want of our trying.
“The months after Ava’s diagnosis were filled with fear for us as she missed one milestone after another and the seizures got worse. At first we accepted the medical advice, and the medicine that was prescribed, and were extremely grateful for it. But the first medication didn’t work, so they introduced a second. It failed, as did the third. The seizures just kept on coming and we were in and out of hospital all the time. I reached out to organisations such as Dravet Syndrome UK, who were excellent support, where at least I was able to come into contact with other families going through the same ordeal as us. We all shared information and it was only then that I first began to hear about the miracle effects and success that some families from the US had discovered using medical cannabis.
“It was something I knew absolutely nothing about. Like everyone I had heard of cannabis, and knew that it was a prohibited drug, but that was as far as my knowledge went. I was so surprised to hear that parents, just like us, were saying that they had tried it with their children and it had worked in terms of reducing, or completely stopping their child’s seizures. It was incredible. Then, I still fully expected the pharmaceutical medication that Ava was taking to work, but as time ticked on, and year after year went by, Ava was now taking up to 15 tablets a day and was still a very ill little girl.
“The breaking point came was when she was four and the doctors told us that there was nothing more they could do for her. Our only option was to go back to the start and try the same medication all over again. I asked, to me, what seemed an obvious question – ‘If it didn’t work the first time, why do you think it will work now?’ There was no answer. With the happy, success stories from families in the US still ringing in my ears, I began researching CBD and thought that we should at least give it a try – but it wasn’t available in Ireland. I (naively now I know) believed that if had the chance to tell Ava’s story to the Minister for Health, Simon Harris, and explain that this was vital to her survival, and most importantly, it was working for other children around the world, he would listen and that would be it. We would have new hope… but it didn’t quite work out like that.
“In our attempts to have Ava’s voice heard we started privately contacting politicians, and sending regular requests by email, but with no response. I then started phoning, politely, but with still no success. It took me an entire year to realise that I was getting nowhere and certainly no closer to achieving my longed-for face-to-face meeting. I believe initially there was a confusion about what we were trying to achieve. If you mentioned cannabis to anyone at that time the response was the same – that it was a recreational drug not a possible life-saving medicine, people really didn’t understand it. I realised that I would have to become knowledgeable and educate people and over time, as I spoke to journalists and members of the public they started to understand and attitudes began to change. During a national radio interview I said, “We’ve tried emailing, calling and we’ve still had no response. My daughter’s life is in danger and if I have to go up on the train and stand outside The Dail all day and night to convince Simon Harris to meet me, then that’s what I’ll do. He called me that evening.
“Paul and I went up to that first meeting with great hope in our hearts. I put Ava’s picture on the table and said everything that I had dreamed of saying for so long to someone who was actually in a position to be able to help us. The response was not what we had dreamt of. We were told that the situation in Ireland for the use of medical cannabis is that a consultant had to prescribe it – but none of them would do it. We had a GP who was willing, and applied for the licence, but was refused by the Department of Health. And that was that. People always say that things will get better… but the reality is things can also get a lot worse, especially without hope. It was then, at our lowest point, that I realised I had to start advocating for Ava to be given access to treatment with medicinal cannabis and started a Facebook page, and an online petition called ‘CBD for Ava’ on change.org
“Gino Kenny TD became a fierce ally and agreed that something had to be done to give the people in Ireland, who desperately needed it, access to medical cannabis, and he was willing to put forward the legislation. At meetings with him around the country I discovered that there are so many people, hundreds in fact, who risk importing it illegally and breaking the law because of the beneficial effects in treating their pain.
“In September 2016 cannabis oil became available in Ireland in the Hemp shop in Dublin as a food supplement. Charlotte’s Web is a CBD oil in its purest form. It was developed when an American mother pleaded with the Stanley brothers to create an oil for her five-year-old daughter Charlotte Figi who also suffered from Dravet syndrome (she became my inspiration). But we were unable to get a neurologist to prescribe it as it was not licensed for medical use. We decided to give it to Ava and for the first time in her life, since she was two months old, her seizures stopped, not completely, but for an incredible 11 days in a row. It was all the proof we needed. But not enough for the Department of Health it seemed.
“My father’s favourite saying is, “If the mountain will not come to Muhammad, then Muhammad must go to the mountain’. One day in November 2016, with nothing new on the horizon in terms of getting Ava the proper treatment with THC oil she needed, I stood up, rang Paul Byrne from TV3 and told him to come and film me because I was going to take my promised drastic action and stand outside the gates of Parliament in Dublin – and I was going to walk there. After about five miles, and no forward planning (I had simply lifted my coat and a pear for a snack on the way) I realised how crazy it all seemed. But as I walked, the thought that kept me going was – what if my daughter dies and I look back and regret that I did nothing?
“Entire communities and schools joined me in support. I think the final number who took part was close to 10,000. It was the most beautiful example of who Irish people are.”
“As the word and media coverage spread, that night I received another call from Simon Harris who agreed to meet me once again the following week. Thinking that this was finally it, my drastic action had worked, I postponed my protest march and got ready to argue Ava’s case again. But again, we achieved nothing. By spring 2017 communication had broken down completely and I decided to finish walking the 200km from my home Dublin – but this time I would finish my journey.
“During those nine days, entire communities and schools joined me in support. I think the final number who took part was close to 10,000. It was the most beautiful example of who Irish people are. When we finally reached Dublin there were approximately 3,000 people at the gates of The Dail. Gino got a text message to say that Simon Harris would meet us once again and at 10pm that night we walked away exhausted, with the promise that experts would be consulted again. But when?
“I never wanted to leave Ireland, but we were left with no choice. Heartbroken, in June, we said goodbye to my mother, who had been our rock, packed up the kids (four of them by then) into the car and headed for the Netherlands, praying we would be home by the time the children had to go back to school in September. We were only able to pay for the trip thanks to the wonderful people who donated to our Go Fund Me page. Equally I’d like to acknowledge the outstanding help and support we received from the Irish community there when we arrived. Our Dutch consultant couldn’t believe the hell we had gone through in our own country (there was also an incident when I was almost arrested at Dublin airport bringing home THC from Barcelona, which which had been prescribed for Ava – but it was confiscated when I declared it at customs), however the bad memories melted away when Ava sang Galway Girl after starting her first medical prescription for THC.
“We tried to make our stay a summer adventure for all the children but by the time September rolled around we were still no closer to returning home together. The Department of Health was insisting on at least three months of evidence that Ava’s condition had improved. For the sake of our other children, I had to return to home in September while Paul stayed in Holland with Ava. Those weeks apart for our family were horrendous and the separation had a huge impact on all of us. Finally, in early December, we received the best Christmas present ever – a licence for Ava had at long last been granted, however I truly believe if we had not had such strong support from politicians like Gino Kenny and the journalists who continued to share our story, my own Government would have left her in Holland with no hurry at all to speed her journey home.
“Thankfully, we have a happy end to our story. Ava has just celebrated her 10th birthday and is now well enough to attend school and begin living her life, although we still have to travel over to Holland every 12 weeks to collect her medication. Unlike in the UK, we are unable to pick up her prescription at our local pharmacy. Only 26 individual licences have been granted in total in Ireland when there are hundreds of people, across a range of illnesses, who could potentially have their suffering eased. I pray that one day attitudes, and the law here regarding the use of medical cannabis will change for every person who genuinely needs it.”
For Ava: An Incurable Illness, A reluctant Activist, An Ongoing Campaign by Vera Twomey is available from Amazon priced £9.