Saturday 18 November 2017

Mother pleads for 'commonsense' approach to medicines such as cannabis oil to help daughter (6) with rare illness

Vera Twomey-Barry from Aghabullogue Co. Cork pictured with her daughter Ava, who suffers from Dravet's Syndrome.
Pic: Daragh Mc Sweeney/Provision
Vera Twomey-Barry from Aghabullogue Co. Cork pictured with her daughter Ava, who suffers from Dravet's Syndrome. Pic: Daragh Mc Sweeney/Provision
Ralph Riegel

Ralph Riegel

A MOTHER of four has pleaded for commonsense on medicines such as cannabis oil after warning she does not want to be forced to quit Ireland to secure life-altering treatment for her six year old daughter.

Vera Twomey-Barry revealed that her daughter, Ava (6), suffered a total of 14 severe seizures at the family’s Cork home in the space of just 24 hours last weekend.

Ava suffers from Dravet Syndrome which involves intractable epilepsy that cannot be controlled by normal medications.

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.”

“We want to stay in Ireland and raise our children here – but what choice do we have if Ava needs the treatment and the only place shecan get it is overseas?”

“All we are pleading for is a little commonsense. If cannabis oil or medicinal marijuana can help Ava, why can’t she be allowed benefit from it in her own country?”

Vera and her husband, Paul, have launched a campaign to help childrenlike Ava in Ireland.

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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