Ava Barry, a little girl with an unusual form of epilepsy, passed away. Her mother had fought fiercely to get her a permission to use cannabis for medical purposes. She was 13 years old.
Vera Twomey, Ava’s mother, caught the attention of the country with her two-and-a-half year fight to get medical cannabis for her daughter’s treatment.
The teenage girl died peacefully in her family’s presence on Friday at a Cork hospital. She had just been sick and was admitted to the hospital.
Ava was diagnosed Dravet’s syndrome when she was a baby, a rare form of severe epilepsy. Her mother emphasised her daughter’s lifelong history of severe and prolonged seizures as part of her campaign.
After years of campaigns, including two 260-kilometer walks from Cork to the Dáil in 2016 and 2017, Twomey was able to get the medical marijuana licence from then-Health Minister Simon Harris in 2017.
Ms. Twomey published a book in 2019 called “For Ava.” She discussed the difficulties her family faced when Ava was hospitalised and in critical condition.
People Before Profit TD Gino Kenny – who was heavily involved in Vera’s Twomey’s campaign – paid tribute to Ava, saying that her mother’s campaign had led to better access to medicinal cannabis for children in need.
“It’s a very, very sad time for the family and the many people that supported Vera and Ava to get access to medicinal cannabis,” he said.
Obviously Vera’s family had to go through a long, long, long process to get access for Ava. But that process had made it easier for other families to get access.
Kenny said that access to medicinal cannabis had provided great relief to Ava in the time that she had it. He said that Twomey’s campaign had garnered huge public support.
“When Vera went walking from Cork to the Dáil that was followed by hundreds of thousands of people,” he said.
“The amount of goodwill that was shown by the Irish people was unbelievable. That eventually did change the law in Ireland, in terms of access.
Ava is survived by her parents and her siblings Michael, Sophia and Elvera Mae.