A teenager whose mother campaigned to access medical marijuana to treat her rare form of epilepsy has died.
Ava Barry, who had Dravet Syndrome, died peacefully last Friday at a Cork hospital surrounded by her family.
Her death follows lengthy campaigns by her mother, Vera Twomey, from Aghabullogue, who walked twice from Cork to Leinster House in Dublin to bring attention to her daughter’s plight.
Over a three-year period, in which she campaigned for access to the treatment, Vera also gave multiple media interviews about the condition which was so severe it caused Ava to suffer from around 20 fits a day, as well as cardiac arrest, and an eight-day coma.
Ava was granted a licence for the use of medical cannabis by then minister for health, Simon Harris, in 2017.
n 2019, Vera – who also assisted other parents in similar situations – published a book called For Ava about the family’s struggles with the syndrome.
According to Vera, the family searched desperately to find treatments that may stave off the serious epileptic fits Ava suffered – which could amount to some 23 per day before she started using THC medicines.
These fits, Vera said, were ‘terrifying experiences’, as they could be fatal or cause brain damage, and required constant ambulance services.
Pain, stress, and anxiety were constants for Ava before she started using medical cannabis, with the family also constantly frightened.
Vera 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 may have varied in extent and severity, but each one was an agonising experience, full of pain and terror.’
She described having access to THC medicals as ‘freedom’, saying that the medicine worked, and that the family could ‘speak openly and honestly about Ava having the THC form of cannabis’.
‘We don’t have to hide in the shadows.’ Vera said, who also described the treatment as the ‘most humane’ form of medication for the condition.
However, it wasn’t always straightforward collecting the medication: in May 2017, Vera was stopped by customs officials who confiscated THC cannabis oil after she returned from Barcelona after flying there to get prescription from a consultant.
Subsequently, she went to live in The Hague in the Netherlands, where she was able to get the treatment prescribed, saying being able to gain consistent access to the medication was a relief – even if she had had to travel abroad.
Following her campaigning efforts, in 2019, Vera was asked to speak in the House of Commons about how alternative medications can be helpful in treating severe epilepsy.
She has spoken about how she feels some personal responsibility to help others by sharing information about the medication and about how she was able to get the prescription for her daughter.
Ava is survived by her parents and her siblings Michael, Sophia and Elvera Mae.
Source: Daily Mail
Image: Daily Mail
