The mother of a six year old girl with catastrophic epilepsy has expressed her devastation after the HSE turned down her application for medicinal cannabis for her little Ava,
Earlier this week Vera Twomey allowed TV3 News to air distressing footage of her daughter Ava having a seizure in a bid to highlight the severity of her condition.
Ms Twomey of Aghabullogue, Co Cork now fears her daughter will die. She was left "heartbroken" today when the HSE turned down her application for medicinal cannabis for Ava.
"I am just crushed. It is horrendous. Ava has been disenfranchised. The pressure is ongoing all the time. They say now that you need a paediatric neurologist (to be granted medicinal cannabis.)
"They told me at the meeting that our application wouldn't be successful without a paediatric neurologist. So I am done for. Because I don't have that and I can't get that for Ava. This isn't fair. I don't know what to do."
Ms Twomey was overjoyed when the Cannabis for Medical Use report recently recommended that cannabis be available for use in the treatment of severe, refractory or treatment resistant epilepsy.
Ava Barry suffers from Dravet syndrome which is a catastrophic form of epilepsy. She can experience up to 23 seizures a day. In recent months her condition has improved as she has started taking cannabis oil.
However, Vera is concerned that she might soon need to change Ava's medication to a different form of cannabis which is not legal in Ireland.
Ms Twomey said she is at the end of her tether at the decision not to grant Ava a compassionate exemption order which would allow her to use the THC form of cannabis.
"I was so looking forward to the (medicinal cannabis) report because it was going to be the answer to all our prayers. I was inundated with congratulations from people and we thought it was all sorted. Ava is now in a precarious position."
Ava has been taking cannabis oil legally sourced from a shop in Dublin since last October.
Vera says her daughter's life has been transformed since she started taking cannabis oil.
"One of the worst days we ever had with Ava was 23 seizures in 26 hours. That was before the oil.The cannabis oil is the best thing to happen to our family.
"Seizures are scary and when it is happening you don't know how the child will be afterwards. Ava could come out of a seizure one day and be brain damaged. That is the reality. So while things have been better we need access to the THC form of cannabis. Without it Ava could die."
In December 2016 Ms Twomey started a walk to Dublin to raise awareness of her campaign for medicinal cannabis. She called off her walk after Minister for Health, Simon Harris contacted her to set up a meeting. She also attended the Dail for the debate on cannabis.
Ms Twomey and her husband Paul Barry attended a meeting with Minister Harris today. The Department of Health issued a statement after the meeting.
It reaffirmed what the Minister said when the HPRA report was released a fortnight ago, namely that a pilot access programme for cannabis based treatments would be rolled out for patients with specific conditions, including severe epilepsy.
"Until such time as the necessary legislative amendments have been made to facilitate the implementation of the Cannabis Access Programme, it remains open to the Minister to consider granting a licence to an Irish registered doctor for access to medicinal cannabis for named patients."