What would you do when your child is having their very first seizure? How would you react? What would you do if the doctors were preparing you for the worst while the medicine is there? Accepting is one option. Fighting, well, that’s another one. Vera Twomey, the author of For Ava: An incurable illness, A reluctant activist, An ongoing campaign, chose the latter.
Ms Twomey, the mother of Ava Barry, an Irish girl who was suffering from hundreds of seizures, talked to Montel Williams, a popular former television host, about Ava’s moving story.
Vera Twomey and Ava Barry turned Ireland upside down; it is not an exaggeration to say that without them Ireland wouldn’t be the same in 2021 – yes, the stigma around cannabis is still very real but it may be fading a little, giving others the opportunity to access life-saving medicines.
From the interview, we learnt a lot about Ava, who is now 12-years-old, and whose medical condition is under control. However, it took a long, decade-long fight and a desperate mother to make it all possible.
It was – and is still – an uphill battle.
Ms Twomey said: “Ava was born in 2009, and everything was wonderful – up until she was four months old. She was diagnosed with Dravet Syndrome. Around four months of age, little children start having seizures, and that’s what happened to Ava as well.
“Her first seizure was 45 minutes long. The first seizure that she had, I don’t really remember a tremendous amount about it. It was just the panic, I remember the panic and the fear.”
We can all picture the scene. It’s heart breaking. What does a parent feel when they see their child laying their seizing? Well, Ms Twomey did go through the worst a parent could imagine.
She said: “I can’t even tell. She was my first child, you know. You’re prepared for battles, the nappies, feeding; often being up in the middle of the night. But she was having a full Tonic-Clonic seizure in my arms, and I couldn’t do anything – just the utter helplessness of not being able to make it stop.”
The specialists in Neurology that Ava’s parents were dealing with saw very quickly that this was not a standard form of generalised epilepsy; that they were dealing with something more complicated. Ava received a diagnosis of Dravet Syndrome within the next eight to 10 weeks.
The seizures just kept coming. The family took Ava in and out of the hospital up to the point that the paramedics no longer asked for an address. They knew they were going for Ava.
In the meanwhile, during those days of uncertainty, Ava was given a lot of tablets and liquids that didn’t work. One medication failed after another.
The recommended neurological treatment protocols didn’t seem to do anything at all.
Ms Twomey said: “We were kind of beginning to think ‘Jeez, she’s on three different forms of medications and, and we’re still in and out of the hospital.’ And then she was on four, and then she was on five. And it went in a cycle like that for a really long time.
“The seizures weren’t being controlled. We started to think, ‘well if the first medication didn’t work, and now we’re on the fourth, maybe we should remove the first one and try the next tree. But nothing was being removed. It was just heaping more tablets – or liquid – on her.”
The seizures were damaging her brain. The doctors told Ava’s parents that she wouldn’t be able to walk or speak, and she would have to use a wheelchair.
Also, the mortality rate with Dravet Syndrome was so high, Ava may not live beyond three years, the doctors claimed.
They were wrong.
Ava turned 12 just a few weeks ago, because she is “just the most extraordinary fighter that you’d ever meet.”
She spent nine days in a coma, and in retrospect, Ms Twomey claimed that the medical professions were kind of preparing them for her passing.
But Ava woke up.
Dravet Syndrome is so rare the family started looking for treatment outside of Ireland – mostly overseas and the UK.
Soon, Ava’s parents discovered that cannabis could be an effective option.
Ms Twomey was adamant: “I said we need to get that. Around 2015, we started to approach the consultants about cannabis, but I just was blocked.
“They looked at me, the particular specialist, looked at me; she stared at me, ignored me and moved on to something else. I think the general consensus was that ‘she was going to lose her mind and she thinks now that cannabis is going to save her child. Unfortunately, it isn’t, and nothing is going to save her child and she has a difficult situation, and her mental health has been affected.’ I experienced a lot of hostility.
“In Ireland, we have a public system, and we have a private system. So the private system is very expensive. But we had to move away from the public system, and try to get seen by a private specialist that would hear us. We were extremely fortunate to be able to find a consultant privately, who wasn’t as resistant – but still was not going to prescribe CBD for us.
“What basically happened was, after seizures on a particular event, we were in the hospital and they told us, there were no options left. And I said, ‘How do you mean?’ And they said, ‘Well, we’ve exhausted all avenues. You need to take her home and make her comfortable.”
After all those years of fighting, Ava was finally given something that was able to help her: CBD.
Fortunately, the Stanley’s had created Charlotte’s Web and it became available in Ireland in a store in Dublin in 2016. Ava’s parents believe that their CBD products saved Ava’s life.
However, despite the evidence was presented, doctors were still reluctant to prescribe medical cannabis – even after it was legalised in Ireland in 2016.
Ms Twomey revealed what she was told: “No, that’s out of the question. They said it’s not a medication, they said there are no clinical trials available. There is not enough evidence. As soon as she got Charlotte’s Web, she had 13 seizure-free days.
“I remember we gave her the CBD the first morning. And I’m telling you, the clocks didn’t stop. The world didn’t end. Nothing. It wasn’t the end of the world. Two hours passed and there were no seizures. There were no seizures during the night either. We stopped talking because we were all thinking the seizures have stopped but we were afraid to kind of say it out loud.
“After 13 seizure-free days, she had she two or three in October, she had four or five in November. But bear in mind, we were people that were dealing with three, four, five hundred seizures every month.
“The only thing that I regret about the cannabis is that I didn’t get it for her sooner.”
Vera Twomey started fighting – even harder than ever. She knew she had the life-saving medicine Ava should’ve been given. The only problem was there were no doctors to prescribe it.
She started using the media and the public to implement pressure on the politicians. She wasn’t backing down until Ava got access to her medicine.
She said: “We would have been lost without Facebook. Then the next thing we’re on television, and we were on talk shows.
“Then I was invited over to speak at the European Parliament over in Belgium. We didn’t have a choice. I think there’s a lot of parents that find themselves in that situation.
“You’re nearly better off with your back against the wall sometimes because you’ve got to come out fighting, don’t you?”
In 2017, Vera Twomey decided to walk from Cork to Dublin to protest the decision that was restricting Ava from getting access to her life-saving medicines. Thousands joined her walk.
She became famous as people wanted to help her, her child and all those others out there fighting the same fight.
She eventually succeeded. The government caved in. The press coverage of the walk got the attention of the politicians. Then Health Minister Simon Harris agreed to meet Ms Twomey in Dublin.
While the problems surrounding cannabis is still real in Ireland, the stigma around medical cannabis is, maybe, started to fade.
If it wasn’t for a brave mom of a severely ill child, Ireland could still very well be moving backwards.
Ava is now 12-years-old. Her condition is now under control. Vera is able to welcome her daughter home from school after a busy day. That’s something that once seemed like an impossibility.
However, Ava and Vera beat the odds every day.
For the full version of the interview, please click here.