An emotional mother of four has issued a heartfelt appeal for the Government to use commonsense regarding current illegal medicines such as cannabis oil, after she reveled she may be forced to travel abroad in order secure life-altering treatment for her seriously ill six year old daughter.
The distraught mother Vera Twomey-Barry, recently spoke about her ill daughter, Ava (6), who suffers from Dravet Syndrome which is an intractable epilepsy that cannot be managed by normal prescription medications. The courageous mother also revealed that her brave little girl also suffered a total of 14 severe seizures at the family’s home in Co Cork in the space of just 24 hours last weekend.
The illness which is also known as Severe Myoclonic Epilepsy of Infancy (SMEI), Dravet is known to affects 1 in 60,000 children in its most severe form. According to medical experts a Dravet sufferer can initially have their seizures treated by normal epilepsy medicines, although after a period of time, the seizures become immune to the medications and increase both in their frequency and severity.
However there is only one known long-term treatment for the debilitating Syndrome and it involves the use of cannabis oil, which is currently not licensed in Ireland or any other EU member states.
Although the revolutionary cure is available in the US, Australia, Brazil and even Columbia, it has left Vera questioning as to why the treatment has not even been considered as an option here. The emotional mum told The Irish Independent: “That is the only hope that Ava now has.” “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?”
The Irish Governments refusal to introduce the new treatment has prompted Vera and her husband, Paul, to launch a new campaign in order to help children like their daughter. It is believed that there are five people who suffer with Dravet Syndrome in Ireland and they all would likely benefit from treatment with cannabis oil, says Vera.
The mother further explained: “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.”
“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.” “All we are asking is that Ava has some chance of a normal life. Surely every Irish child has that right,” she said.
If you wish to support Vera, Paul’s and little Ava’s campaign you can do so by obtaining details on their Facebook page ‘CBD For Ava Support’.