‘We know this works' says Ava's mum after Dutch cannabis trial

IT was a tough decision but the right one to make for Aghabulloge couple Vera Twomey and her husband Paul in deciding to move their family over to Holland.

They've travelled there to seek treatment for their daughter Ava (7) who suffers from a rare form of epilepsy called Dravet Syndrome. 

Ava is prone to several seizures a day and their quest for her to be treated with medicinal cannabis for her condition led them to seek help abroad.

‘Things are good here and Ava is seizure free again so that makes it several days in a row. It's just amazing to see your child getting better before your eyes,' Vera told The Southern Star.

‘She is already eating and sleeping better and is happier in herself. Her appearance has also improved and she has used some new words in the last 10 days that she didn't use before, and that is very significant for someone like her who is non-verbal and doesn't have the vocabulary to express herself.'

While Ava improves on a daily basis due to twice daily doses of the cannabis-based CBD and THC oil, Vera and Paul are there to get the clinical evidence to prove that medicinal cannabis works for her.

‘We know CBD works and the addition of THC has made all the difference to her. We are here until such time as the clinical evidence we produce will be accepted and we can apply for a licence to come back to Ireland with the medication for Ava.'

Getting the treatment from a Dutch GP is just like going for any other treatment to a doctor where a decision is made whether it's appropriate for the child.

‘The doctors here are completely incredulous and completely confused and appalled that considering what Ava has gone through our country wouldn't allow her to try this medication. They're confounded by it really,' Vera said.

The news last week that the Dáil Health Committee have rejected TD Gino Kenny's Cannabis for Medicinal Use Regulation Bill was a huge disappointment for both Vera and Paul.

‘I think it's a complete betrayal of the people in Ireland that came out, stood up, spoke out, sent emails, visited constituency offices and did all that they could to highlight their need for it too. 

‘I would just like to know what actually does the government think is more important than easing the suffering of the citizens of our State?' she asked.

Vera said there are small children that are having 12 to 15 seizures every day which the medication would help with.  

‘It wouldn't be legal in Holland or Germany if it didn't work,' she pointed out.

‘We're gathering the clinical evidence to prove it works,  and we need to come back to Ireland as this is not our home, or where our family is.

‘Ava has a right to a medication that works so she will have a right to that licence once the medical evidence is gathered together and presented.'

A GoFundMe page was set up recently to assist Vera and her family while in Holland and so far over €30,000 has been donated by people young and old and from all walks of life.

‘We really appreciate the donations people have made on the GoFundMe page. We were not allowed to gain access to the Treatment Abroad Scheme for this medication as we were told it was an experimental treatment. That's why we set up the GoFundMe page. It's peoples' generosity that has resulted in us being able to be here and it's their generosity, too, that has allowed us to stay here.'

Musicians have also gotten behind Ava's campaign and a ‘Party for Ava' held in the Tivoli Theatre on Tuesday night saw the likes of Mick Flannery, Kila, Paddy Casey and many others raise funds for Ava.

Vera has also been nominated to appear on screen at U2's gig in Croke Park gig this Saturday, as they put a call-out for the people of Ireland to nominate inspirational Irish women.

‘My friend James O'Sullivan nominated me and then  other people started nominating me. I think it would be lovely, but I think it's very unlikely I would be chosen. We'll see what happens! It would be really amazing for Ava if it did happen,' added Vera.

There will also be a coffee morning in Aghabullogue Community Centre on Saturday July 29th at 10am until 2pm, as part of ongoing fundraising efforts for Ava.

MEP Luke ‘Ming' Flanagan questioned whether political parties have lost their nous after Gino Kenny's Medicinal Cannabis Bill was rejected.

‘The support for medicinal cannabis is overwhelming. When Vera Twomey walked to the Minister's office in Dublin, she had tremendous support. Everyone could see that she was fighting for the good of her child Ava. An honest battle, a humane request,' said the MEP.

‘The Minister and the other public representatives have not done their job. They have abdicated their duty to a faceless institution called the Health Products Regulatory Authority (HPRA). We need politicians to represent the people of Ireland. For as long as the Oireachtas is peopled with abdicators, it will be a kip,' he added.

In a video posted to her Facebook page on Tuesday, Vera noted Ava remained seizure-free, thanks to the cannabis treatment.

‘She is doing so, so well. We went for a little drive yesterday and she was rock solid the whole time. She is speaking more and climbed to the top of the stairs herself. She is singing, playing, walking. Everything is going so, so well and I want to thank everybody for supporting us.'