Fighting for Ava

Vera Twomey has spent the last seven years fighting for her daughter to receive the medication she needs to treat her daughter’s rare form of epilepsy. But the battle still isn’t over, she tells Carissa Casey.

When Vera Twomey’s daughter Ava was first diagnosed with Dravet Syndrome, a particularly horrible form of epilepsy that can cause up to 23 seizures a day, the prognosis was that Ava would be unlikely to survive past her third birthday and she would certainly never walk. 

Ava is now 11 and her seizures are 95 per cent under control. Like any other little girl of her age, she’s funny, happy and, most definitely, boss of the house, says her mother. 

“Ava just defied all the predictions,” says Vera. “It’s a privilege to be her mother. It’s your duty to fight hard for someone like her because she’s such a fighter herself.”

Vera certainly had a fight on her hands from the very start. After exhausting every pharmaceutical medication available for Dravet to no avail, Vera learned of the benefits of medical cannabis in treating the condition. 

“Ava was having several seizures almost every day, with more than 20 on a bad day. They may have varied in extent and severity, but each one was an agonising experience, full of pain and terror.” 

The ambulance was called so frequently to the family’s home in Aghabullogue in East Cork, that the emergency services didn’t need to ask for an address. Vera lived in constant fear that the next seizure would cost Ava her life.

In a desperate attempt to find a treatment that would work, Vera began researching medical cannabis and campaigning for it to be made available in Ireland. It was a long road that started back in 2015 and eventually led her to take Ava to the Netherlands in June 2017. There she found a GP and a neurologist with more than a decade’s experience in treating Ava’s condition. The little girl was prescribed Bedrocan, a form of medical cannabis, and she finally began to thrive. “It really was extraordinary to see her improve. Ava didn’t have any other realistic options to keep her safe. We did what we had to do,” says Vera.

In December of that year, the Irish government finally relented and granted the Twomeys a ministerial license to bring the drug into Ireland. The family were able to move home but every 12 weeks had to return to the Netherlands to purchase three month’s supply of the drug, paying €9,500 up front which would then be refunded to them by the Irish authorities. 

“To be honest with you it was an exhausting situation, especially having to organise Ava. When they told us delivery of the medication wasn’t possible, we sort of accepted it and resigned ourselves to travelling every three months to collect it.”

Then Covid hit and travel to the Netherlands, which was particularly badly hit at the start of the pandemic, was simply too dangerous. After lobbying the government, arrangements were made to have Bedrocan delivered to Ava’s home, but only on a temporary basis. 

“We felt Covid was an unknown quantity and we wanted to make delivery permanent. I have  hardly stepped outside my door in the last year for fear of Ava contracting the virus.”

In December Vera met with Health Minister Stephen Donnelly via Zoom and he confirmed that delivery would be permanent. 

In January of this year Minister Donnelly announced a Medicinal Cannabis Access Programme which would allow people to avail of medical cannabis where existing treatments had failed, with the cost of the drug paid for at the source. It seemed as if all of Vera’s prayers had been answered. But a problem quickly emerged; Bedrocan, the drug Ava used, was not included in the new program.

“The medical advice we have gotten from our consultants – we have one here and one in the Netherlands - is it would be very dangerous to change her medication. Her seizure control is extremely fragile and their opinion is that it would be an unnecessary risk to move her to another medication. We might lose the seizure control and might never get it back,” explains Vera.

After contacting the relevant authorities about the omission, Vera was told that there was a legal impediment on the Dutch side to Bedrocan being included in the new program. “To be honest with you, that’s the only response that I have got from them,” says Vera. “It’s not possible to include it now and it won’t be possible in the future. They’re telling me it’s not available for commercial export which seems bizarre to me because we’re getting deliveries of it at the moment so surely that’s an export.”

While Ava will still have access to the drug under the current ministerial license, Vera is worried that once the new program is up and running that license might be revoked. 

“It’s discretionary at the moment,” she says. “We’ve been through an awful lot and I’d be frightened - I’ll admit that – that there could be a change. There could be a different minister for health with a different perspective on medical cannabis, a more negative perspective. If we’re not within some kind of formalised system then we’d suffer the consequences,” she says.

So what is behind all this reluctance to allow an 11 year old child access to medication that has probably saved her life and, at the very least, given her some semblance of a normal childhood? Vera believes it’s a combination of fear, conservatism and ignorance. 

“When we were prescribed Ava’s medical cannabis over in the Netherland, we were attending the most extraordinary hospital that I’ve ever been in, with cutting edge equipment and technology. The consultant that prescribed our medication had experience of this for over a decade. This was not something that happened in a room somewhere. This was done in a public hospital in the Netherlands with wonderful professionals.”

“We’re accessing a prescribed drug, not getting it off the street from some gangster. She’s taking tablets, we’re not rolling her joints and I’m not rolling them for myself either.”

Vera is regularly contacted by people in a similar situation. “They’re often in a terrible state looking for a prescription for themselves or for their children, for epilepsy, for chronic pain, for multiple sclerosis, all sorts of different conditions. They just get stonewalled. The consultants don’t want to talk about it. I feel for the consultants because they’ve not been provided or haven’t sought out the education so that they can speak with authority about the medicine in the same way they’d be able to speak with authority about pharmaceutical medications.”

The emotional cost to Vera is profound. “It’s really upsetting to be talking so publicly about the vulnerability of your child or yourself. We’ve been trying to get access for seven years. We had to talk in this public way about Ava’s business but it’s a private matter. It shouldn’t be something you have to talk about. But if we hadn’t done what we did we wouldn’t have got where we are for the child.”

To stay up to date with Vera and Ava follow Vera on Twitter @veras1