Cork medicinal cannabis campaigner, Vera Twomey, whose 13-year-old daughter Ava passed away in May following a lifelong battle with a rare form of epilepsy called Dravet Syndrome has expressed her gratitude for the support she received in Ireland and overseas.
Speaking to The Hard Shoulder, on Newstalk, Ms Twomey, who is a mother of four, said that public was instrumental in getting her through her lengthy, but ultimately successful campaign, to obtain medicinal cannabis for Ava who was experiencing catastrophic and potentially life ending seizures.
She also thanked all those who sympathised with her family after Ava died in hospital in Cork on May 26th last following an illness.
“I hope that some of the people who reached out to us and offered condolences to us know that we deeply appreciate the communications that were made.
Ava was a marvellous person who fought very hard for so many years. We were so grateful to have the support of so many people in this country and beyond this country as well.
There are so many people responsible for us having the privilege of us having had her for so many more years. It is important for us to come out and thank people for that. “
Medicinal cannabis
Ms Twomey said that medicinal cannabis helped Ava to have the quality of life that she deserved.
“And to extend her life for several years beyond the expectations of any of the medical professionals. We had seven years of Ava being seizure free until the start of this year because of medicinal cannabis. Seven years is a long time.
"She (Ava) was a brave person and a beautiful person and somebody that never gave up. She was somebody you would be proud to call your daughter.”
Vera admitted that losing Ava was the realisation of her worst nightmare.
“It is like the world is not enough without her. There is a tremendous void. It is very difficult to adjust. I can’t really say whether personally I’m coping or not, but I’m still here anyway. But the ability to not reach out and be with her is extremely difficult. (I think) of her smile. She didn’t have to speak. She controlled a room. She was a remarkable lady. She didn’t have to use that many words. Her energy was something that was very special.
"She would have spoken when she wanted something! She had her priorities. It is very odd that the place is so silent without her. It seems not as special and wonderful a place to be without her.”
In 2017 then Minister for Health Simon Harris granted a licence for the use of medicinal cannabis by Ava.
Vera, who is from Aghabullogue, Co Cork had walked from Cork to Leinster House in Dublin on two occasions in a bid to highlight the plight of young Ava. Her condition was so serious that it had previously pushed her in to cardiac arrest and an eight-day coma.
Vera gave numerous media interviews over a three year period in which she said that she was desperate to gain access to THC to prevent her daughter’s severe epilepsy attacks. She also assisted other parents who were in similar positions to her.
Ms Twomey punished a book called “For Ava” in 2019 in which she told of the struggles that her family experienced when her daughter was seriously ill.
Prior to obtaining medicinal cannabis Ava was having up to 23 seizures in 26 hours. Vera previously said that seizures were “terrifying experiences” as she never knew if her daughter would come out of one intact. The fear was that Ava would end up brain damaged or dead.
Vera previously stated that her life prior to obtaining medicinal cannabis for Ava was one of constant stress, pain and anxiety.
"Every waking moment was consumed by it. I operated under constant fear and tension waiting for the next seizure. It was coming though you never knew when -- but as sure as day it was coming.
Ava was having several seizures almost every day, with over twenty on a bad day. They may varied in extent and severity, but each one was an agonising experience, full of pain and terror."
Spanish perscription
In May 2017 Vera went to Spain to get a prescription from a consultant for medicinal cannabis for Ava.
Customs officials confiscated the THC cannabis oil from Ms Twomey after questioning her for an hour after she got off a flight from Barcelona.
She went to live in the Hague in the Netherlands in the latter half of 2017 where she again received a prescription of the drug for her daughter. At the time Ms Twomey said that it was a relief to finally gain consistent access to the medication even if she had to go overseas
“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. THC has saved Ava’s life and changed her life and is the most humane form of medication."
Speaking in 2017 Ms Twomey admitted that she felt 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."
Ms Twomey was asked to speak in the House of Commons in London in 2019 about the benefits of the alternative medicine in treating conditions such as severe epilepsy. She was also named Cork Person of the Month in May 2018.
