Doctors tell Ava’s Parents, Vera and Barry, They Have Run Out Of Pharmaceutical Options
Ava Barry has an extremely rare, drug-resistant form of epilepsy. Six-year-old Ava suffers from several seizures every day, many of them violent. Several types of pharmaceutical medications have not improved her condition and she has to spend time in hospital frequently.
Her parents Vera Twomey and Paul Barry believe there is one thing that can help her: cannabidiol (CBD) oil, a form of medicinal marijuana.
Vera says CBD oil, could help alleviate some of Ava’s symptoms. Earlier this year, doctors told Vera and Barry they have run out of pharmaceutical options, but could try some of the failed medicines again in different formats.
They set up an online petition about access to medicinal marijuana in Ireland. It is available in some countries and certain states in the US. The petition, which had almost 22,000 signatures at the time of this post. This Petition will be sent to Health Minister Simon Harris.
Dravet syndrome is extremely rare, affecting about one 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. However, her condition means she regularly misses days.
“At the moment, if we got Ava to go to school two days a week you’d be concerned she’d not be able to do a third day, we’re thrilled if she does three. Last year she got to school five days a week just twice.cI can’t tell you, how badly she wants to go to school, how annoyed she is at me when she can’t go,” Vera, Ava’s Mom
“They’ve never gone away. We’re still struggling, she’s still having seizures. She’s still going through an awful lot. I’m still very, very worried about her – that she might not come out of one of the seizures.”
Vera is in contact with a number of parents in other countries whose children have a much better quality of life since they got access to CBD oil.
She says she is aware of one girl from the US whose seizures have reduced from about 300 a month to just three.