Ava Barry’s family face a split in the coming weeks, with her parents planning for them to live in two different countries for the children’s sake.
Ava, with her mother and father and three siblings, moved to the Netherlands last month in order to access a medicinal cannabis treatment for her rare and severe form of epilepsy.
She was unable to get the treatment in Ireland and her family are delighted to see the medication having a positive effect. But it has come at a cost to the rest of the family.
“My second daughter, Sophia, is very distressed,” Ava’s mother Vera Twomey said.
“She is missing my mother terribly. You’re trying to explain to a six-year-old why we are here but she cannot be expected to understand. She wants to go home.”
The upcoming academic year is also a concern. Sophia is going into senior infants while four-year-old Michael is due to start primary school.
“We have talked about putting them in school here in the Netherlands but we don’t think it is the right thing for them. So to try and maintain as much normality as possible, we want to bring them back home.”
They plan is that Vera will bring Sophia, Michael and two-year-old Elvera Mae home to Aghabullogue, while dad Paul remains with Ava in the Netherlands. They feel they are doing what is best but still worry about the effect on the children.
“We are hoping it won’t be detrimental to Ava, to have the rest of us leave, it is a worry. But Ava and Paul have a tremendous bond.”
It would be particularly upsetting to see her affected when the medication is working so well at the moment.
“She is still seizure-free and is coming along so well. She is talking. It is hard for parents whose children developed normally to understand how huge something like that is for us and for Ava. The medical cannabis has given her the opportunity to speak.”
The family are grateful to donors to a gofundme campaign which is helping with the costs of their stay in the Netherlands. The money gives some security, it is very hard when no one will give us any indication of how long we will be here.”
Vera is working with the Dutch medics to maintain extensive documentation. The aim is to be able to show clinical evidence that the treatment is working, with a view to accessing it in Ireland at some point. She has been in contact with the HSE to update them on Ava’s progress but has no idea of if or when her daughter may be treated with the medication in Ireland.