Pubdate: Mon, 01 Aug 2016
Source: Irish Times, The (Ireland)
Copyright: 2016 The Irish Times
Author: Olivia Kelleher


Cbd Oil Dispensed in Several US States but No Doctor Here Will 
Prescribe It Cork Mother Made Plea to Minister for Health but Says 
His Hands Tied by Law

The mother of a six-year-old girl with a rare and catastrophic form 
of epilepsy fears her daughter will die unless a consultant goes out 
on a limb and prescribes cannabis oil to lessen her seizures.

Ava Barry from Aghabullogue in Co Cork endures hundreds of seizures every year.

Her mother, Vera Twomey, fears her daughter's life will be cut 
prematurely short unless a doctor prescribes cannabis oil which has 
been known to control the severity and number of seizures.

Ava suffers from Dravet syndrome and can have up to 16 seizures a 
day. Vera says doctors have tried all sorts of medication in a bid to 
control the seizures, but with little success.

"The bottom line is my daughter is going to die unless she gets help. 
I am just at the end of my tether and thinking what am I going to do? 
We have been through 11 medications with Ava, all of which have failed.

"We have tried all sorts of therapies  cranial sacral therapy, 
massage therapy, equine therapy, occupational therapy, you name it. 
Cannabis oil is all we have left but nobody will prescribe it."

Brain damage

Family life revolves around containing Ava's seizures. They can last 
two minutes or up to 90 minutes. Vera fears the seizures will cause 
her daughter brain damage.

"I have stood at hospital beds, and nurses have rushed back and 
forth, and she is still seizing and all I can do is pray."

Ava is rushed to hospital at least once a week. Sometimes the trigger 
for a seizure is as simple as a bath being too warm. Her parents 
believe her best hope lies in CBD, an oil derived from the cannabis plant.

A number of states in the US have laws allowing cannabis to be 
recommended and dispensed to people for medical reasons. However, 
Ava's family have been unable to receive the oil in Ireland.

"We are unable to get a consultant from Ireland to prescribe it. But 
there are extremely well respected doctors in other parts of the 
world who prescribe it. Just because doctors in Ireland won't 
prescribe it doesn't mean it is not working in other countries for 
other patients."

Impassioned plea

Speaking on radio earlier this summer, Vera made an impassioned plea 
for a meeting with Minister for Health Simon Harris. She had a phone 
call and a very pleasant meeting with the Minister but she says 
essentially his hands are tied as the drug is illegal in Ireland.

Meanwhile, a Bill has been introduced in the Dail to allow the use of 
cannabis and cannabis-related products for medicinal purposes, 
through the provision of a cannabis regulation authority.

Pain relief

People Before Profit TD Brid Smith highlighted cases of people 
affected by serious illnesses who receive pain relief through the use 
of cannabis. The Dublin South-Central TD said that in cases of Dravet 
syndrome, "cannabis oil can help a great deal to prevent fitting and seizures".

Ms Smith said the second group that uses it quite frequently are 
those with multiple sclerosis.

Vera says all she wants is a semi-normal life for her extraordinary 
little girl. "She likes Tom Jones and . . . would like to 'Talk to 
Joe' as she is a fan of Joe Duffy. She knows her nursery rhymes. She 
likes the Bee Gees. She likes singing, Yes Sir I Can Boogie.

"She is an amazing kid who just needs a chance in life. We know there 
is no cure but if CBD could help then why not prescribe it for her? 
They said she would never walk or talk. She does both. We just want 
her to live as good a life as is possible."
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