- 07 Sep 17
The event is being held in aid of seven-year-old Dravet Syndrome sufferer Ava Barry
Susan O’Neill (SON), Propeller Palms, Tommy Keating, Hank Wendell and The Hurricanes are just some of the artists set to perform at the ‘Songs for Ava’ fundraiser in Kitty Kiernan’s, Waterford, this coming Sunday, September 10th.
‘Songs For Ava’ is being held in aid of seven-year-old Ava Barry, a sufferer of an extreme form of epilepsy called Dravet Syndrome. In recent times Ava’s mother, Vera Twomey, has become nationally famous as a medicinal cannabis advocate as she campaigned to get Ava access to medicinal cannabis products in Ireland.
In March, she walked from her home in Cork to Leinster House in protest at government inaction on the issue. The following month, accompanied by Luke ‘Ming’ Flanagan MEP, she flew to Ireland from Barcelona (where the medication is legal), but had the drugs confiscated at Dublin Airport.
Vera, Ava and the rest of the family were recently forced to up sticks and move to Holland where the medication is fully legal. Since arriving in Holland, Ava has begun her CBD and THC medication which has been prescribed by a GP. Since Ava started the treatment, she has been almost completely seizure free.
Ava was previously suffering with up to 20 tonic clonic seizures per day, making her life unbearable. These types of seizures are also known as convulsive seizures in which the person loses consciousness, falls, stiffens (the tonic portion of the seizure), and jerks (the clonic portion of the seizure).
Earlier this month, Ava’s mother Vera Twomey was forced to return home to Ireland with her two other children (who had to go back to school), leaving her daughter behind with her husband, Paul. Paul and Ava are now essentially medical refugees in Holland.
“Me and Ava are going to be here now,” Paul told TV3 News last week. “The rest of the kids and Vera, my wife, have gone home. We were told to go away and get evidence, and get this, that and the other, and no-one wants to see it.”
Vera Twomey had held multiple discussions with Minister for Health Simon Harris, who had told her that the only way that Ava would be able to access medicinal cannabis – which is not licensed to be prescribed in this manner in Ireland – would be if her consultant applied for dispensation.
Minister Harris has stated: “If a medical clinician in this country, if a consultant in this country, believes that any person, child or adult, requires a substance that is not legal medicine they can seek a licence from my department. As of now, I have no licenses pending in my department.”
Vera Twomey herself will be making a special appearance on the night, singing a few songs with Hot Press’ ‘Hot for 2017’ pick Susan O’Neill (SON). Along with the likes of Paddy Casey, Mundy and Ronan O’Snodaigh, SON also performed at the recent ‘Party for Ava’ held in Dublin’s Tivoli Theatre.
“I haven’t actually met Vera yet,” Susan tells us, “but we’ve spoken on the phone. She sang down the line to me, and the lady can certainly hold a tune. I’m really looking forward to meeting and performing with her. The medicinal cannabis issue is a cause that’s extremely close to my heart, and it’s great to be able to help in any way I possibly can.”
The full line-up for ‘Songs for Ava’ is SON, 3 Sound Folk, Hank Wendell, Karen Hegarty, The Hurricanes, Brand New Cadillac, Back To Basics, Propeller Palms, Tommy Keating and The Backroad Smokers Club. Some as yet unannounced special guests are also expected to perform.
The doors of Kitty Kiernan’s, on Barrack Street, open at 3.30pm on Sunday, September 10th, and the gig will go on until closing time. Tickets are priced at a ridiculously cheap €5.