Saturday 24 March 2018

'I'm doing everything to save my daughter - you've betrayed us' - Simon Harris confronted by young mother

Vera Twomey speaking witrh Minister Simon Harris in Cork on Thursday January 12 (photo: Provision)
Vera Twomey speaking witrh Minister Simon Harris in Cork on Thursday January 12 (photo: Provision)
Vera Twomey and her daughter, Ava. Photo: Dave Conachy.
Ralph Riegel

Ralph Riegel

A young mother sobbed as she confronted Health Minister Simon Harris during his Cork hospital tour today over the ongoing delay in getting life-saving cannabis oil treatment for her daughter.

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

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

"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 cannot believe what you (the Government) have done to us.

"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.

"You were able to give a statement to TV3 and able to tell them what was going on but you didn't have the common decency to come down and have a word."

Mrs Twomey-Barry broke down and had to be consoled by her husband, Paul, and friends during the impromptu meeting with Mr Harris as he entered Mallow General Hospital to open a new local injuries unit.

The family have been campaigning for cannabis oil treatment to be made available for Ava for almost two years.

Mr Harris said he had three meetings with the family over recent months as Health Minister.

He stressed that he does not have a signed request from a doctor to sanction the provision of cannabis oil use under a ministerial exemption provision for Ava.

"The law is very clear - if we want to make a medicinal cannabis product available I need a doctor to make an application.

"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.

"When I met you I made it very clear that the HPRA will have that review done this month," the Fine Gael TD said.

"By the end of this month we will know what we can do in relation to medicinal cannabis. I have made it very clear I will follow those recommendations.

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

"It is very important that people understand," he said.

"I have huge personal respect for you Vera - that is why I met you three times. I want to help and I will help."

But her husband, Paul, said they were effectively being ignored by the Government.

"Why do you keep ignoring us? We have had no phone call replies, no email replies and no text replies - nothing.

"We have done everything you asked - every time it is another road block after another road block."

He claimed that every time the family are ready to make a full submission to the Department of Health, officials come back looking for further information and queries.

Mr Harris stressed that he does not have the required application from a doctor for Ava's medicinal cannabis use.

"If a doctor puts in an application for your daughter to have medicinal cannabis that will be acted on. No application has been made - there is not a doctor who has submitted a an application.

"I don't like talking about individual patients cases but Vera has spoken very publicly about the extraordinarily difficult circumstances she finds herself in.

"Vera and Paul will rightly do everything for their daughter Ava.

"As Minister for Health 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. I am not in a position to prescribe medication. What I am in a position to do is twofold.

"The law in this country allows a doctor to apply for a license to my department to provide a product to a named patient. I have not yet received that application.

"I can say categorically I have not received that application.

"An application was submitted for another child and was granted before Christmas.

"When that application (for Ava) is submitted, it will be assessed immediately and as an absolute priority."

Vera had protested outside the Dail in rain and hail on Wednesday evening demanding action on treatment for her daughter Ava (6) - and wept as she said she felt "humiliated and frustrated" at the lengths she was having to go to just to get cannabis oil treatment for her child.

Last November, Vera had launched a 300km walk from her Cork home to Dublin in a desperate bid to meet Mr Harris.

The little girl suffers from Dravet's Syndrome and has terrible bouts of seizures.

The walk was called off after a meeting was arranged with Mr Harris.

Vera warned the family cannot wait any longer and need urgent action.

Ava suffers from Dravet Syndrome, a rare condition where she gets virtually uncontrollable epileptic seizures.

The little girl suffered 16 seizures alone over one 36 hour period.

Children with Dravet eventually reach a point where normal medications become increasingly ineffective in controlling the seizures - with medicinal cannabis oil the only known treatment option.

"My daughter is extremely ill. She is having seizures every day and they are getting worse," she said.

"She desperately needs this treatment and we desperately need help."

The Aghabullogue mother of four said she is now desperate to get help in Ireland for Ava.

"A lot of politicians have told me that the situation is very complicated. I fully accept that.

"But I am afraid that if Ava suffers something like 22 seizures, will she have another heart attack and will she be gone? There have been four or five children since the start of the year and they have passed away.

"You are looking to the future and wondering is that going to happen to us?"

Also known as Severe Myoclonic Epilepsy of Infancy (SMEI), Dravet affects just one in 60,000 children in its most catastrophic form.

With Dravet Syndrome, a sufferer can initially have their seizures treated by normal epilepsy medicines.

However, over a short period of time, the seizures become immune to the medications and increase both in their frequency and severity.

The only known long-term treatment for Dravet Syndrome involves the use of cannabis oil.

However, the controversial product is not licensed in Ireland or other EU member states.

Its medicinal uses, in specific cases, has led to cannabis oil being permitted in parts of the US, Australia, Brazil and even Columbia.

“That is the only hope that Ava now has,” Vera explained.

“I don’t want to be forced out of Ireland with my family to get treatment for Ava.”

There are five people with Dravet Syndrome in Ireland – and all would likely benefit from treatment with cannabis oil.

One trial in the US indicated that a person with Dravet Syndrome who was suffering 300 seizures every day managed to reduce those to just two seizures a month thanks to cannabis oil.

“All we are asking for is a little commonsense. That and the realisation that children like Ava don’t have any other alternatives,” Vera said.

“It is heartbreaking to have to take Ava to an emergency department when she gets severe seizures despite knowing that there is nothing they can do for her.”

The couple, who are based in Aghabullogue in mid Cork, have three other children, Sophia (4), Michael (3) and Elvera-Mae (14 months).

“All we are asking is that Ava has some chance of a normal life. Surely every Irish child has that right,” she said.

Details of Vera and Paul’s campaign for Ava is available from Facebook on ‘CBD For Ava Support’.

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