Diagnosed at 4 months, Ava Twomey suffers with a rare genetic condition which means untreated she suffers up to 20 epileptic seizures a day.
The condition called Dravet Syndrome can prove fatal but in the last three months, 6 year old Ava has improved dramatically. Speaking to JOE, Ava’s mother says the progress she has made is sensational, ‘my daughter has started speaking, before October she wasn’t speaking at all’.
Since October, Ava has been taking Charlotte’s Web, a particular brand of the non psychoactive cannabinoid, CBD. Charlotte’s Web which the Twomey’s buy from a shop on Dublin’s Capel street, was named after Charlotte Figi, another child who suffers from Dravet syndrome. Figi was confined to a wheelchair at 5 years of age and unable to talk or eat because of the daily seizures she endured. Now, Figi is a normal healthy 8 year old after being given medicinal marijuana as treatment.
While Ava’s health and wellbeing, Vera says, ‘has changed beyond belief, her teachers are blown away by the improvement. Her doctor’s never thought she would make any improvement but she is still fragile’.
Charlotte’s Web has reduced Ava’s seizures by 80%, but the family has been advised that Cannabis oil containing around 1% of THC could benefit Ava even more.
THC is the element of cannabis which is psychoactive, it is the element that makes people high. Such a small dosage as 1% however would have no psychoactive effect on Ava.
The two elements of the plant benefit each other says Vera. ‘It is a child’s right to have access to the medication that they need in their own country’, the inclusion of THC, says Vera, will provide Ava with better mental stability and has the potential to reduce her seizures to nil.
Vera has been campaigning for access to the medication for months, she has protested outside Dáil Éireann for hours and she began walking from Cork to Dublin in November to attract attention to the plight of her family as well as the hundreds of others who would benefit from the government allowing precscription for medicinal cannabis.
Vera was asked by Minister for Health Simon Harris to stop walking across the country and she did so on the understanding the Minister would assist her family.
But every time they comply with the Minister and Health Products Regulatory Authority (HPRA) requests for documents, they are told they need something else says Vera, ‘ we’ve done everything they’ve asked but there is always another hurdle’.
A petition, which already has over 24k signatures has been set up and Vera is asking people to sign it and show their support for the introduction of medicinal marijuana in cases like Ava’s, where the drugs simply don’t work.
A policy review into the use of medicinal cannabis has been ordered by Minister Simon Harris by the HPRA and is expected at the end of the month. Harris has said he will act immediately ‘I don’t what to pre-empt or prejudice it but I would hope that if it sees a benefit to the availability of medicinal cannabis, I can act on that immediately”.
You can sign the petition for Ava here.
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