Medical cannabis campaigner Vera Twomey has said the death of her daughter Ava has left a “tremendous void” in her life. 

Ava suffered from Dravet's Syndrome - a rare form of epilepsy - and the family’s determination to obtain a prescription of medical cannabis for her made national headlines.

In 2017, then Minister for Health Simon Harris granted Ava a licence to use medical cannabis and the family say it ended the daily seizures that had made her life so difficult.

“People might know that it was medical cannabis that helped Ava to have the quality of life that she deserved to extend her life for several years beyond the expectations of any of the medical professionals,” Ms Twomey told The Hard Shoulder. 

In May, Ava passed away; she was 13-years-old and Ms Twomey said the time had come to publically pay tribute to her “brave and beautiful” daughter.

“She was somebody that you’d be proud to call your daughter,” she said.

Ms Twomey says when she thinks of Ava she thinks of her smile, her love of jigsaws, Ed Sheeran and school - but life since her death has been extremely difficult without her.

“It’s like the world is not enough without her,” she said.

“There’s a tremendous void.

“Your actions during the day, you kind of double take because there is so much time… It’s very difficult to adjust and I can’t really say whether I’m personally coping or not.

“But I’m still here anyway.”

The Citizens’ Assembly on Drug Use is considering how Ireland’s drug laws might be reformed but Taoiseach Leo Varadkar said the Government might not accept all their recommendations.

To Ms Twomey, it was a “tremendously disappointing” pronouncement.

“Someone like Leo needs to try and make an effort to understand that for people like my daughter it was their only opportunity left to access a quality of life,” she said.

“[People] should have the potential to access medical cannabis as an option for the treatment of their illness on a par with other pharmaceutical medication.

“It shouldn’t be made difficult.”

You can listen back here:

Main image: Vera Twomey