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Sunday 30 April 2017

Mum fighting to save daughter tells Harris 'you've betrayed us'

Vera Twomey-Barry with her six-year-old daughter Ava Picture: David Conachy
Vera Twomey-Barry with her six-year-old daughter Ava Picture: David Conachy

A young mum broke down and sobbed as she confronted Health Minister Simon Harris during a hospital tour over the delay in getting life-saving cannabis oil treatment for her daughter.

Vera Twomey-Barry challenged Mr Harris over why a special sanction had not been given for cannabis oil to be given to her daughter Ava (6) who suffers from Dravet Syndrome.

One Irish child has already been given cannabis oil because of a life-threatening condition.

Betrayed

"You are putting your hand out to me now but you didn't put your hand out to me since before last Christmas," the mother-of-four sobbed.

"I had respect for you. I have been a member and I have voted for Fine Gael for the last 20 years of my life. You have betrayed us and let us down.

"I have stood outside that [Dail] gate - the humiliation of standing outside that gate yesterday from 1.45pm until 7.30pm.

"Gino Kenny eventually came up and he pulled me away from the gate because he said I had to come away as I was frozen and perished with the cold."

Mrs Twomey-Barry broke down and had to be consoled by her husband Paul and friends as she confronted Mr Harris when he entered Mallow General Hospital to open a new local injuries unit.

The minister was also confronted by another mother, Suzanne Kelly, over the lack of resources allocated to her non-verbal daughter Angel (3).

Ava suffers from Dravet Syndrome, a rare condition where she gets virtually uncontrollable epileptic seizures, which can be can be life-threatening. She suffered 16 seizures in one 36-hour period alone.

Mr Harris said he had three meetings with the family over recent months. "The law is very clear - if we want to make a medicinal cannabis product available I need a doctor to make an application," he told Mr and Mrs Twomey-Barry.

"You both have been very powerful campaigners in relation to medicinal cannabis. As a result of your campaigning and the work of other families I have reviewed the policy on medicinal cannabis for the first time ever."

Illegal

"But I am not a doctor - I cannot prescribe a product that is illegal in Ireland to anybody."

"I have huge personal respect for you, Vera - that is why I met you three times. I want to help and I will help. Vera and Paul will rightly do everything for their daughter Ava.

"I want to do everything and anything to help Ava and any other patient. But my role is very clear - I am not a doctor."

Mr Harris vowed to immediately consider any request by a doctor for cannabis oil for Ava.

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