Daughter dies aged 13 from rare condition after mum's battle to get Medical Cannabis
Ava Barry suffered from Dravet Syndrome, a rare neurological condition that affects around one in every 15,000 people in the UK. She tragically died in Cork, Ireland, on Friday.
A girl has died at the age of 13 after her mum fought for a long time in a bid to get medical cannabis for her.
Ava Barry passed away in a hospital in Cork, Ireland, on Friday after receiving treatment for a recent illness.
The teen suffered a rare form of epilepsy that caused her to have catastrophic seizures, and her mum, Vera Twomey, had been campaigning to get medical cannabis for her.
Her mother Vera, who is from Aghabullogue, Cork, had walked from the city to Leinster House in Dublin on two occasions in a bid to highlight the plight of young Ava.
The girl's condition was so serious that it had previously pushed her into cardiac arrest and an eight-day coma, reports the Irish Mirror.
Ms Twomey said she was desperate to get access to THC - the main psychoactive compound in marijuana - to prevent her daughter's severe epilepsy attacks caused by Dravet Syndrome.
The rare neurological condition affects around one in every 15,000 people in the UK.
As well as experiencing severe, difficult-to-control seizures, children and adults with the condition have varying degrees of intellectual disability and a spectrum of associated conditions (known as ‘comorbidities’), which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep, explains Dravet Syndrome UK.
During her campaign, Ava's mum also assisted other parents who were in similar positions to her.
In 2019, Ms Twomey published a book called 'For Ava' 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 their daughter's condition.
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.
Vera previously stated that her life prior to obtaining medicinal cannabis for Ava was one of constant stress, pain, and anxiety.
Ava's mum fought to get access to medical cannabis to prevent her seizures
She said: "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 20 on a bad day. They varied in extent and severity, but each one was an agonising experience, full of pain and terror.
In May 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.
The ambulance service callouts were so regular for Ava that they did not even need to ask for her address.
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.
She explained: "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.