Tuesday, 12 April 2016

Ava Barry, A Story of Hope

Ava Barry is a 6 year old girl who has been diagnosed with Dravet Syndrome.

Dravet Syndrome is a severe myoclonic epilepsy of infancy otherwise known as SMEI.
It is a type of epilepsy combined with seizures that are often associated by hot temperatures or fever.
The seizures often last 5+ minutes and most often require medical emergency intervention.
Communication, motor & cognitive functions will stabilise however significant delays will persist.
Sadly, children with Dravet Syndrome are at a higher risk of sudden unexplained death in epilepsy (SUDEP) than those with other types of epilepsy.

Ava's mother Vera kindly agreed to talk to me so as to help raise awareness of Ava's condition and highlight the petition that is currently in place to legalise cannabis oil in Ireland.

Ava recently appeared in the paper:

Cannabis Oil is a substance made up of cannabinoids that is extracted from the cannabis plant.
It is taken by dividing the resins from the cannabis flowers.
Research suggests that cannabis oil could reduce or even stop the debilitating effects of Dravet Syndrome.


Ava Barry is my six year old darling girl. She has dravet syndrome which is severe form of drug resistant intractable epilepsy she has daily seizures which last from two minutes to several hours in length.
She has all types of seizures, where she would fall to the ground and her body shakes.
Absences are when she stares into space away for moments at a time.
Drop seizures are when the power goes from her legs and she falls.
It is exhausting for her after a seizure she needs to sleep and rest up.
It disrupts her life completely and affects her personal freedom.
As we, her parents have to monitor her twenty four hours a day, seven days a week.
We get some help from a night nurse during the week but it is completely draining and neither Paul (my husband) or myself have had a proper stress free nights sleep since she was diagnosed.
Ava was diagnosed at four months old, she went for a routine vaccination in the morning at 11am and by 8pm that night she was in her first tonic clonic seizures which lasted forty five minutes.
In the time since then we have never missed a month where we have not been in hospital with Ava.
Ava didn't have symptoms up until her first seizure, she was perfect in every way. Neurologists have admitted to us that vaccination triggers dravet syndrome but they do not want to blame the vaccine as a cause because the diagnosis dravet syndrome is gathered from genetic testing done with results that show a change in the scn1 gene which Ava has. This change occurs in the womb when the baby is being formed.

The Petition


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