AVA BARRY HAS Dravet syndrome, an extremely rare, drug-resistant form of epilepsy.
She suffers from several seizures every day and frequently spends long periods in hospital. Some 11 types of pharmaceutical medication have failed to improve her condition.
Ava’s parents Vera Twomey and Paul Barry believe there is one thing that can help her: cannabidiol (CBD) oil, a form of medicinal marijuana.
They have set up an online petition about access to medicinal marijuana in Ireland. It is available in some countries and certain states in the US.
The petition, which had over 6,000 signatures at the time of publication, will be sent to Health Minister Leo Varadkar.
Vera says a medication called Epidiolex, which contains CBD oil, could help alleviate some of Ava’s symptoms.
Ava (6) was diagnosed with the condition when she was just four months old.
Dravet syndrome is extremely rare, affecting about 1 in 20,000 births, and causes regular and prolonged seizures.
When Ava was diagnosed her parents were told she would not walk or talk, but she has defied the odds in this regard and now attends school. “She’s a complete and utter warrior,” Vera says.
Due to the rare nature of the disease, Vera and Paul took to the internet to find people dealing with the same thing. Vera told TheJournal.ie many parents based in the US have seen huge improvements in the standard of life their child has after using CBD oil.
Vera says doctors told her about six weeks ago that they have run out of pharmaceutical options, but could try some of the failed medicines again in different formats.
“We thought ‘Oh my god, this is it, what are going to do?’,” Vera recalls.
“All you can hope for is that a CBD trial will come to Ireland.
It’s horrendous to be standing there looking at her. You are doing everything that you can. There is more you can do but someone else is blocking the path to it, well more so circumstances or attitudes.
A trial was carried out in the UK, but places were very limited.
Vera says she could buy the oil online but it’s very expensive and she doesn’t want to get access to the medicine illegally.
If she was a little girl born in Colorado she could go to hospital and get treatment to stop her seizures, and go home and eat her meals and enjoy the company of her family and live her life.
“Just because she’s from Cork she can’t have the medicine she needs.”
‘Exempt medicinal product’
The Department of Health sent TheJournal.ie the following statement:
“At this time there is no authorised medicine in Ireland containing cannabidiol (often referred to as CBD) oil. However a prescriber may, under his/her personal responsibility and in order to meet the special needs of a patient under his/her care, prescribe a medicine that is not authorised in Ireland.
Such a medicine is referred to as an ‘exempt medicinal product’. Where a doctor writes a prescription for an exempt medicinal product, the pharmacy will usually order this from an authorised wholesaler or manufacturer which then notifies the HPRA of the supply of these exempt medicinal products.
“It would, therefore, be possible for a patient or patient’s carer to discuss this with a medical practitioner who can prescribe CBD to treat a child under his/her care who suffers from severe epilepsy, in line with the conditions and process outlined above.”
Vera says this statement makes it sounds as though it is relatively easy to access the medicine, but this has not been the case for the family.
The doctors looking after Ava have advised her family to stick with conventional medicines, despite the fact they have not worked to date.
“It doesn’t necessarily mean that the doctors are no good, they are good doctors but they don’t have the right treatment for her,” Vera states.
The petition can be viewed here.
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