Irish “medicinal cannabis refugee” Ava Barry, 8, arrived home from The Hague over the weekend with her parents and was reunited with her siblings for a family Christmas, writes Olivia Kelleher.
Ava, who is from Aghabullogue, Co Cork, travelled to Holland last summer with her family to receive medicinal cannabis for a catastrophic form of epilepsy called Dravets Syndrome.
After two years of campaigning, her parents Vera and Paul this week received the news of the granting of the medicinal cannabis licence for Ava.
Paul Barry said it was great to be “finally home.”
“We are delighted. We are going to have a normal boring Christmas. We are going to bring the kids to Santa, eat plenty of turkey and fall asleep in front of the TV. T’was a long road to get to here but it is worth it. But you have to ask where the compassion was?”
Supporters, friends, and family turned out at Cork Airport to greet Ava as she was reunited with her brothers and sisters Sophia, Michael, and Elvera Mae.
Vera Twomey says that she is relieved that the family’s nightmare is finally over.
“We have had no ordinary life whatsoever. As for Christmas we will just have a few people around. But its going to be great to be home for it. I can’t believe it has finally happened.”
Vera says that Ava has her “freedom” back now that she has a prescription for medicinal cannabis.
“It is freedom for us. We have a medicine that works. We can speak openly and honestly about Ava having the THC form of cannabis. We don’t have to hide in the shadows.
“We know that CBD oil and THC work. Ava has got better and better every day. She is seizure free. THC has saved Ava’s life and changed her life and is the most humane form of medication. Now she is just dealing with ordinary childhood illnesses like bugs rather than multiple seizures a night.”
Ms Twomey has branded the delay in obtaining a licence a “disgrace”.
“The professionals in Ireland are looking at their professional equivalents in Holland and they want the training. It is a disgrace.
“The consultants here are trained [on medicinal cannabis] and the education is provided by the equivalent of their department of health.
“We felt such helplessness and powerlessness in Ireland. We landed on our feet here. The paediatric neurologists are extraordinary.”
The mother-of-four said she feels a personal responsibility to help other people in similar situations.
“It doesn’t matter if you are the first, second or 23rd person to get medicinal cannabis. It is your duty to share some of your success and how it is achieved. I feel so sorry for people dealing with things like Lyme disease.”
Ms Twomey thanked her supporters for their fundraising which enabled the family to move to Holland to obtain legal medicinal cannabis for Ava. She also paid tribute to friends, relatives and the wider community for contacting TDs and councillors urging them to fight for the family.
“It has been going on for so long and I really appreciate what people have done for us. People have been amazing.”
Over the course of her long campaign, Vera walked from Cork to Dublin in order to highlight the plight of her daughter. She incurred a knee injury on the trek to Dublin and was pushed in a wheelchair for the last few miles of her journey. She also travelled to Spain to get a prescription for medicinal cannabis only to have the drug confiscated at Dublin Airport.
Prior to using medicinal cannabis, Ava suffered up to 23 seizures a day. Her parents feared that she would lose her life during the course of her seizures and were living through a “total nightmare”.
This article first appeared on the Irish Examiner.