Vera Twomey says medical cannabis gave daughter Ava seven years of 'the quality of life she deserved'

Vera Twomey and her daughter Ava in 2016. File  Picture: Denis Minihane.

Vera Twomey, whose daughter Ava Barry passed away in May, has said that medical cannabis allowed her daughter's life to be extended beyond the expectations of medical professionals and gave Ava "the quality of life that she deserved."

Ava Barry, 13, died on May 26, following a lifelong battle with Dravet Syndrome — a rare form of epilepsy.

Ms Twomey, who is from Aghabullogue, Co Cork, has spent years campaigning for access to medicinal cannabis for people who require it due to illness.

She walked from Cork to Leinster House on two occasions to highlight the plight of her young daughter. 

Because of her condition, Ava suffered frequent seizures as a child. Vera Twomey previously told the Irish Examiner how Ava's condition was so severe that it pushed her into cardiac arrest and an eight-day coma.

Vera gave numerous interviews over a three-year period in which she said she was desperate to gain access to Tetrahydrocannabinol (THC) medicine to prevent her daughter’s severe epilepsy attacks. She also assisted other parents who were in similar positions to her.

Towards the end of 2017, Ava was granted a special licence which allowed her to receive cannabis treatments at home in Aghabullogue.

Thereafter, Vera Twomey said Ava's life improved drastically, and she was able to have seven seizure-free years, which Vera maintains she would not have had without medical cannabis.

In 2019, Vera Twomey published a book, For Ava, in which she documented the struggles that her family experienced while Ava was seriously ill.

Vera Twomey: 'There are so many people responsible for us having the privilege of us having had her for so many more years.' File Picture: John Delea

Speaking on Newstalk's The Hard Shoulder, Vera Twomey expressed her gratitude to everyone, in Ireland and abroad, who supported her family for so many years, and to those who offered their condolences in the wake of Ava's passing.

"We were so grateful to have the support of so many people in this country and beyond this country as well.

"There are so many people responsible for us having the privilege of us having had her for so many more years," she said.

"It is important for us to come out and thank people for that."

Ms Twomey said that medical cannabis allowed Ava's life to be extended.

"We had seven years of Ava being seizure-free until the start of this year because of medicinal cannabis. Seven years is a long time.

And I hope that some of the people who reached out to us and offered condolences to us know that we deeply appreciate the communications that were made.

Speaking about life since Ava's passing, Ms Twomey said: "It's like the world is not enough without her. There is a tremendous void. It is very difficult to adjust.

"I can’t really say whether personally I’m coping or not, but I’m still here anyway."

She said that Ava was a brave and beautiful person and "somebody that never gave up".

She was somebody you would be proud to call your daughter.” 

Ava's condition, Ms Twomey said, "was part of her life, but it wasn’t all of her life".

"She loved jigsaws. She loved Ed Sheeran. She loved to go to school. She loved her teachers. 

"There was so much more to her than seizures. We were very lucky to have her.”