Fundraiser to help Ava Barry combat cruel form of epilepsy
A CORK mother wants to have Epidiolex which contains cannabidiol (CBD) which is derived from cannabis made legal in Ireland so that her little daughter’s life will no longer be controlled by a rare form of epilepsy.
Vera Twomey from Aghabullogue is the mother of four children and her oldest daughter , Ava first began having seizures when she was just four months old. She suffers from a rare form of epilepsy called Dravet syndrome, which hampers cognitive development.
Vera and her partner, Paul Barry are also the parents of Sophia, Michael, and Elvera Mae.
While there is no cure for Dravet Syndrome Vera told The Corkman that CBD would greatly enhance Ava’s quality of life. “She would no longer be controlled by this cruel epilepsy,” said Vera.
On this Sunday, July 10 at the Hydro Farm in Tower in Blarney, an open day will be held from 2-6pm coupled with a fundraiser to support Ava who is six years old. The event will be opened by Dr Richard Barter, a great grandson of the original Dr Barter who started building the hydro farm in 1843. People will be able to walk around the imaginative allotments, designer sheds, poly tunnels and greenhouses. Tehre will also be allotment stalls with delicious goodies on offer.
Paul and Vera Twomey Barry will also speak about Dravet Syndrome and all donations will go directly to their little girl.
While CBD is not approved for sale or use in Ireland, it is in Colorado and it has also undergone trials in the UK. Vera said this medication is also legal in Australia and in Brazil.
Ava’s seizures could range from her arms and legs shaking to an absent seizure where Vera said it seems her daughter is “just staring into space” to drop seizures. She said a drop seizure is where Ava is walking normally and suddenly it is like all her strength is flipped from her body and she falls to the ground like jelly. Her eyes can also flicker up to 400 to 500 times per day.
“What I want is this drug even a trial drug of it and if it fails it fails, but I know that it will help her. I don’t want to rip my family apart because of this.
“I love Aghabullogue and it is the best place to raise a family. As I said I don’t want to split my family up and leave three small children. I want to have CBD legalised so my daughter can have a real chance,” she said.