Cork woman, Vera Twomey's teenage daughter Ava has died aged 13.
Ava had a rare form of epilepsy known as Dravet Syndrome, which caused her to have daily catastrophic seizures.
The Aghabullogue woman led a lengthy campaign for her daughter, and others like her, to be granted access to medicinal cannabis.
"Before getting access to medicinal cannabis, Ava would experience up to 23 catastrophic seizures a day.
Her mother Vera described them as "terrifying experiences" - because of the constant fear that Ava would end up brain damaged or dead.
The seizures were so severe that she experienced cardiac arrest as well as an eight-day coma.
In May 2017, Vera went to Spain to get a prescription for medicinal cannabis for Ava, however customs officials confiscated the THC cannabis oil on her arrival home.
She then moved to the Hague in the Netherlands with Ava later in 2017 - where Ava had consistent access to the medication - relieving her of the worst symptoms of the disease.
Vera walked from Cork to Leinster House on two occasions to highlight Ava's situation.
In late 2017, Ava was finally granted a licence for the use of medicinal cannabis in Ireland.
Vera Twomey said she felt a personal responsibility to help other people in similar situations, even speaking in the House of Commons in London in 2019 about the benefits of the alternative medicine in treating conditions such as severe epilepsy.
13-year-old Ava passed away peacefully in hospital on Friday following a recent illness.
She is survived by her parents Vera and Paul and her siblings Michael, Sophia and Elvera Mae.
