Cork girl Ava Barry is on her eighth seizure-free day, less than two weeks after beginning a new treatment in the Netherlands.
Ava’s mother Vera Twomey fought a long campaign to get access to a specific medicinal cannabis treatment in Ireland for her daughter, who suffers from a rare form of epilepsy.
When she was unsuccessful the family made a decision to move abroad and Ava began treatment under the care of Dutch doctors at the end of June.
Vera described the joy of seeing the medicine have the desired effect.
“It is just the most incredible feeling to see your child improving in front of your eyes.”
The lack of seizures is having a knock-on effect on Ava’s quality of life. Before she began treatment she regularly suffered multiple seizures in a single day.
“She is eating better, she is drinking more, even her sleep has started to improve a bit,” said Vera.
She hopes Ava will now have the chance to develop her use of speech, without the debilitating effects of the seizures.
“I know her ability is there and waiting to be drawn out, but up to now we would try to make progress and then another seizure would knock her back and undo all the work. The doctors are thrilled with her progress and very supportive.”
Disappointingly for the family, Vera sees no sign of the treatment being made available to Ava in Ireland, in the short-term anyway.
“Without a shadow of a doubt we are going to be months. From what I can see it is going to be a difficult road. We are facing a door and we can see the lock and we are just waiting for someone to turn the key.”
In the meantime, the costs associated with moving their whole family from Aghabullogue to the Netherlands are considerable. People have generously donated to Ava’s gofundme campaign and a fundraising night is being held in Dublin’s Tivoli Theatre on July 18.
Well known Irish singers Rónán Ó'Snodaigh from Kíla and Paddy Casey are headlining the event but Vera said she would love to see more involvement from Cork.
“If any acts or musicians from Cork would like to get involved, they can contact me.”
The family are grateful for the support to allow Ava access the treatment abroad but in the long term, all they want to do is return home.
“You would hope there would be more compassion,” Vera said.
“Ava is a child who needs to come home, surely they cannot refuse her.”
Ava’s younger sister Sophia has added her voice to the chorus. Yesterday Vera posted a video on Facebook of the little girl sending a plea to health minister Simon Harris: “Hello Simon, my name is Sophia. We need the medical cannabis, please make it medicine and make it happen. Help Ava.”