Vera Twomey’s daughter Ava suffers from Dravet syndrome, a rare but severe form of epilepsy that hampers sufferers’ cogitative development.
Despite being told that she would never walk or talk because of her diagnosis, Ava achieved both, and attends Our Lady of Good Counsel School in Ballincollig.
However, she requires round-the-clock care and monitoring due to the frequent severe seizures she suffers. There is no cure for Dravet syndrome, but Vera says seizures could be alleviated from medication called Epidiolex, which contains cannabidiol (CBD), which is derived from cannabis.
While the medication is not approved for sale or use in Ireland, it is available in Colorado and has undergone trials in the UK. Vera says that the effectiveness of the treatment varies from patient to patient, but that there are reported instances where treatment has seen sufferers who experience dozens of seizures a day reduced to a couple a month.
Having tried all medications approved in Ireland to no avail, the mother of four says she is desperate to see if the treatment can make a difference for her eldest child.
“If I can’t get what this child needs here I’ll have to pick her up and bring her to Colorado, but I just can’t do it, it would break up my family.
“Our options would be to go there for 12 to 18 months for constant treatment, or go for three months, come back, and then head back over again.”
Vera said Ava can suffer seizures that can set back her development, that skills she has learned can be lost.
“She could pick up words, have a seizure and they would be lost again.
“One of her first words was ‘nice’. She said it a couple of times, then suffered a cluster of seizures and then she did not say it again for another two years,” Vera said.
Ava suffered her first seizure as a four-month-old baby, an experience that lasted 45 minutes. She now requires 24-hour monitoring. While the Twomeys avail of the services of a nurse for two nights a week, the rest of the time they use a video monitor to keep an eye on their daughter at night.
“The example I use to explain it to people is a small child with a sore ear or sore throat that goes on for a few days,” said Vera. “You give them medicine but you need to keep an eye on them at night for three or four days, and it gets tiring. Life has been like that for us every night for the past five and a half years.”
A spokesperson for the Health Products Regulatory Authority said, while cannabidiol is not a controlled drug according to the Misuse of Drugs Act, Epidiolex is not authorised for use in Ireland.