'Ava is at peace now': Cork campaigner Vera Twomey pays tribute to daughter after death

13-year-old Ava suffered with a rare form of epilepsy, the symptoms of which were eased by the use of cannabis

Vera Twomey with her daughter Ava in February 2016. File picture: Denis Scannell

Ava Barry, daughter of Cork campaigner Vera Twomey, who fought a lengthy campaign to gain access to medicinal cannabis for her child, has died.

Ava, 13, who had Dravet syndrome, a rare form of epilepsy which caused her to have daily catastrophic seizures, passed away in hospital on Friday, surrounded by her family. She had been hospitalised following a recent illness.

In 2017, the then-health minister, Simon Harris, granted a licence for the use of medicinal cannabis by Ava. 

Vera, from Aghabullogue, Co Cork, had walked from Cork to Leinster House in Dublin twice in a bid to highlight her daughter's plight.

Ava’s condition was so serious that it had previously 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 THC to prevent her daughter’s severe epilepsy attacks. She also assisted other parents who were in similar positions to her.

She published a book, For Ava, in 2019, in which she told of the struggles that her family experienced when her daughter was seriously ill.

Ava Barry from Aghabullogue with her mum Vera Twomey and her dad Paul Barry in 2017. Picture: David Keane.

Prior to obtaining medicinal cannabis, Ava was having up to 23 seizures in 26 hours. Vera said the seizures were “terrifying experiences” as she never knew if her daughter would come out of one intact.

Vera previously said that her life prior to obtaining medicinal cannabis for Ava was one of constant stress, pain, and anxiety.

In May 2017 she went to Spain to get a prescription from a consultant for medicinal cannabis for Ava. Customs officials confiscated the THC cannabis oil from Ms Twomey after questioning her after she got off a flight from Barcelona.

She went to live in The Hague in the Netherlands in the latter half of 2017, where she again received a prescription of the drug for her daughter. At the time Ms Twomey said it was a relief to finally gain consistent access to the medication.

“THC has saved Ava’s life and changed her life and is the most humane form of medication,” she said.

Following her daughter’s death, Vera said that Ava is at “peace now”.

Ava is survived by her parents and her siblings Michael, Sophia, and Elvera Mae.