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WARNING. Some viewers may find the below clip distressing.
A MOTHER HAS released harrowing images of her young daughter suffering from seizures to put pressure on health officials to speed up her access to potentially life-changing medication.
Vera Twomey released a video to Tv3 News of her daughter Ava suffering from a severe seizure.
Ava suffers from Dravet Syndrome, a debilitating condition which can see her suffer as many as 20 seizures every day.
Dravet Syndrome is a rare form of epilepsy that is resistant to drugs. However, Vera says that a form of medicinal marijuana can help her daughter.
Ava was on a medication called Charlotte’s Web – a cannabis extract – to help reduce the frequency of her seizures – which it did.
Charlotte’s Web contains very little THC – which causes the psychoactive “high” associated with cannabis use.
From the time Ava began taking Charlotte’s Web on 2 October until the end of that month, she only had seven seizures. This compared to several hundred over the course of other months.
But as medicinal cannabis is not legal in Ireland, Ava cannot use the drug, despite it reducing her symptoms on such a dramatic scale.
Vera has been campaigning for the past year to have medicinal marijuana legalised in Ireland.
A bill that would regulate the use of cannabis for medical purposes was passed to committee stage by the Dáil in December of last year.
As well as this, Health Minister Simon Harris announced earlier this month that he would establish a compassionate access programme for cannabis-based treatments for certain conditions.
However, Vera has said that she still hasn’t heard from anyone to approve them for the treatment.
Speaking to TV3 News, Vera called for the HSE to look at Ava’s case and speed up her access to the treatment.
“We have to get help for her now,” Vera said.
The HSE said they would look towards Ava’s application for medicinal cannabis as a priority, they’d look at it urgently. But their sense of urgency and our sense of it are not meeting up at all.
Vera has met with minister Simon Harris in the past and is due to meet him again on Thursday. She pleaded with officials to speed up Ava’s access to the life-changing medication, saying that time is running out for her daughter.
“When she goes into a seizure you don’t know what way she’s going to be when she comes out,” she said.
Her life is on the line. It really, really is. Every time.
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Did Leo buy a publicly package from the Journal or something? Every other day there’s another article about him. You would think that FG have been in opposition for the past 10 years with all the false promises he’s coming out with.
@John Smith: The journal is plaumausing Leo like mad now. He must be loving it.
@mark daly: He and his PR team must be paying for it! Desperate way to try to regain lost ground in the polls. His name associated with a few good news articles doesnt make up for the mess this country is in after 11 years of FG. There’ll be no fanfare when hes Taoiseach again
Will he row back on this one too, like the 30% income tax rate ?
@Mark Sheridan: But of course he will & we’ve already been Told by another cowboy politician that , that’s what they do in order to win votes ( They make FALSE promises) bunch of ……..
Just another carrot thrown at the electorate.But the majority of the electorate have been copping on to sir leo for quite a while now and just won’t buy it.
How do the self employed get this? Their tax rates, which are higher than anyone elses, help pay for the leave for those on PAYE. Perhaps the self employed should be looked after first and foremost in all these giveaways.
@Laura McCarthy: They more likely l pay for the thousands of self employed who work in cash and can be very economical with the truth when it comes to filing accounts .
@Liz O’Neill: That’s the tradesmen you are talking about I presume?
What’s your take on Mr Troy?
@G Row.: Whatever line of work you’re in you should pay your fair share of taxes.
@Liz O’Neill: You could be self employed if you want, you could avail of all those savings.
Leo needs to stop making promises that he can’t possibly fulfil before he rotates into the Taoiseach role. Sick Pay is a massive change and no employer nor govt dept is anywhere near in a ready state for that. Bereavement Leave is more fairytale talk. Make a bereavement leave provision in employment legislation for x days for immediate family members only paid for by the employer, similar to holiday pay legislation. Most employers pay for it anyway. Making self-employed pay for it also through PRSI makes no sense.
Bereavement is not and should not be covered under force majeure leave. As per the article it is under compassionate leave, of which is STILL unlegislated for. Why should it come from the social insurance fund? Would it not be better legislated like the new sick policy scheme?
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