Vera Twomey fought to secure access to medicines for Ava Barry, who had Dravet syndrome
A book called For Ava was published by Ms Twomey in 2019. In it, she wrote about the struggles her family experienced when Ava was seriously ill. She said 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 their daughter was in.
Ambulances were called so regularly for Ava that the family stopped having to provide their address when calling, Ms Twomey said. Prior to securing Ava access to medicinal cannabis, Ms Twomey said her life was one of constant stress, pain and anxiety. “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 then went to live in The Hague in the Netherlands, where she again received a prescription of the drug for Ava. 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.
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