Vera Twomey will be familiar to many for her campaign to get medicinal cannabis for her now nine-year-old daughter Ava.
She has written a book, For Ava, about that journey so far, and she joined us on The Last Word to tell their story.
Ava had her first seizure at four months old and was diagnosed with Dravet syndrome, a severe form of epilepsy which begins in infancy.
Vera was told that Ava would never walk or talk, and that she probably wouldn't live beyond the age of three. She says: "I wouldn't wish it on even the most heartless person."
As Ava grew older she began having various types of seizures every day. Vera estimates that she could have up to 10 or 12 tonic-clonic seizures a day, and 40 or 50 absences.
Half of the medications they tried had no effect on Ava's seizures, while others resulted in side effects including a loss of the speech she had managed to learn.
Vera says these experiences taught her be "more proactive" in her research on medication, which is how she discovered the benefits of medicinal cannabis.
The medicinal cannabis, which is administered in two small doses a day, has resulted in improvements in appetite, balance and sleep for Ava. She is also interacting better with her siblings and is attending primary school, where she is very happy.
Ava used to spend four to five months a year in hospital, but next October will mark three years since her last emergency admission.
Vera says: "The medical evidence is out there."
"She's doing so well, and there's no reason why that can't continue. If we must regroup and fight again for her that's what we will do, but we know that it works."
Listen to the interview in full by pressing the play button on this page.
