The death has occurred of the teenage daughter of Cork woman, Vera Twomey, who fought a lengthy campaign before she gained access to medicinal cannabis for her beloved Ava who had a rare form of epilepsy which caused her to have daily catastrophic seizures.
Ava Barry (13) who had Dravet Syndrome, passed away peacefully in hospital in Cork yesterday (Friday) surrounded by her family. She had been hospitalised following a recent illness.
In 2017 then Minister for Health Simon Harris granted a licence for the use of medicinal cannabis by Ava. Her mother Vera, who is from Aghabullogue, Cork had walked from Cork to Leinster House in Dublin on two occasions in a bid to highlight the plight of young Ava. Her condition was so serious that it had previously pushed her in to cardiac arrest and an eight-day coma.
READ MORE: Irish mum Vera Twomey honoured for tireless campaigning for epileptic daughter
Vera gave numerous media interviews over a three-year period in which she said that 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.
Ms Twomey published a book called For Ava in 2019 in which she told of the struggles that her family experienced when her daughter was seriously ill.
Vera said that they ran out of options to treat Dravet Syndrome and that “there was nothing there but Google” as they desperately searched for a solution to the dire circumstances of their daughter.
Prior to obtaining medicinal cannabis, Ava was having up to 23 seizures in 26 hours. Vera previously said that seizures were “terrifying experiences” as she never knew if her daughter would come out of one intact. The fear was that Ava would end up brain-damaged or dead.
The ambulance service callouts were so regular for Ava that they didn't need to ask her address.
Vera previously stated that her life prior to obtaining medicinal cannabis for Ava was one of constant stress, pain and anxiety.
"Every waking moment was consumed by it. I operated under constant fear and tension waiting for the next seizure. It was coming though you never knew when -- but as sure as day it was coming.
Ava was having several seizures almost every day, with over twenty on a bad day. They varied in extent and severity, but each one was an agonising experience, full of pain and terror.
In May of 2017, Vera 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 for an hour 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 that it was a relief to finally gain consistent access to the medication even if she had to go overseas.
“It is freedom for us. We have a medicine that works. We can speak openly and honestly about Ava having the THC form of cannabis. We don’t have to hide in the shadows.
THC has saved Ava’s life and changed her life and is the most humane form of medication."
Speaking in 2017 Ms Twomey admitted that she felt a personal responsibility to help other people in similar situations.
“It doesn’t matter if you are the first, second or 23rd person to get medicinal cannabis. It is your duty to share some of your success and how it is achieved."
Meanwhile, Ms Twomey was asked to speak in the House of Commons in London in 2019 about the benefits of the alternative medicine in treating conditions such as severe epilepsy. She was also named Cork Person of the Month in May of 2018.
The funeral arrangements for Ava will be confirmed in the coming days. Ava is survived by her parents Vera and Paul and her siblings Michael, Sophia and Elvera Mae.
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