Some 11 types of pharmaceutical medication have failed to improve Ava Barry’s condition.
Ava Barry has Dravet syndrome, an extremely rare, drug-resistant form of epilepsy.
She suffers from several seizures every day and frequently spends long periods in hospital. Some 11 types of pharmaceutical medication have failed to improve her condition.
Ava’s mother Vera Twomey has set up an online petition calling for cannabidiol (CBD) oil, a form of medicinal marijuana, to be legalised in Ireland. It is available in some countries and certain states in the US.
The petition, which had over 6,000 signatures at the time of publication, will be sent to Health Minister Leo Varadkar.
Ava (6) was diagnosed with the condition when she was just four months old.
Dravet syndrome is extremely rare, affecting about 1 in 20,000 births, and causes regular and prolonged seizures.
When Ava was diagnosed her parents were told she would not walk or talk, but she has defied the odds in this regard and now attends school. “She’s a complete and utter warrior,” Vera says.
Due to the rare nature of the disease, Vera and her husband took to the internet to find people dealing with the same thing. Vera told TheJournal.ie many parents based in the US have seen huge improvements in the standard of life their child has after using CBD oil.
Source: Órla Ryan, The Journal, 29/04/16
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