A Coroner has paid tribute to medicinal cannabis campaigner Vera Twomey and her husband Paul for their “Herculean efforts” to access CBD and THC for their daughter, Ava, who died last year following a long battle with Dravet Syndrome.
The jury at the inquest of Ava Barry of Aghabullogue, Co Cork, heard that the 13 year old passed away at Cork University Hospital (CUH) on May 27th, 2023.
Barrister for the family Doireann O’Mahony, BL, told Cork Coroner’s Court that Ava had at one point become a “medical exile” as she and her family had to move to the Netherlands to gain access to medicinal cannabis to prevent seizures.
“It (medicinal cannabis) was like a miracle in the lives of the family. There was a 50 to 70 percent reduction in Ava’s seizures.”
She said that Vera spent several weeks in the Puffin Ward at CUH during her daughter’s last hospitalisation because she was the only person who was licensed to give Ava her medicinal cannabis.
However, Caoimhe Daly BL for CUH stressed that the hospital had done everything in its power to engage with Ms Twomey in relation to finding a practical solution to the matter. However, she said that Ms Twomey wasn’t comfortable with leaving the medicinal cannabis at the hospital.
Coroner Philip Comyn had said that perhaps the situation could be looked at to allow hospital staff, or a nominated person in hospital, to administer medication which is subject to a special licence in certain situations.
The jury recorded a verdict of death by natural causes. They recommended that a national policy be developed to create greater supervision in relation to the administration of medicines which are not licenced for use in this country. The recommendation will be known as Ava’s Protocol.
The inquest heard that Ava was initially hospitalised on March 30th 2023. She was a patient of the Bons Secours in Cork before she was transferred to CUH.
Pathologist Dr Margaret Bolster carried out a postmortem on Ava. She said that the youngster died of broncho pneumonia on a background of Dravet Syndrome.
In her submissions to the Coroner, Ms O’Mahony said that Ava had experienced up to twenty seizures a day before she was prescribed medicinal cannabis.
She stated that such was the distress of Vera about the condition her daughter was in she walked from Cork to Leinster House in order to highlight her bid to obtain a licence for medicinal cannabis for her daughter.
In May of 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.
In late 2017 Minister for Health Simon Harris granted a licence for the use of medicinal cannabis by Ava.
The inquest had heard that Ms Twomey was concerned about changes to her daughter’s THC regime whilst she was in her final weeks at CUH. However, medics indicated that all clinical decisions which were made were in the best interest of Ava given her drop in weight and vulnerable condition.
In a statement to the court Vera said that Ava was “one of the most spectacular people” she had ever met.
“The first day I met her in the CUMH on the 26th of November 2009 I remember saying to a nurse are you sure she is mine she is so beautiful? It was on that day my privilege to be her mother commenced.
Her beautiful jet-black straight hair on arrival turned to the most glorious shade of blonde with ringlets and with her crystal blue eyes with lashes that continued to be the envy of all for the whole of her life she looked out at the world and beamed.
Her smile took up her whole face and she infected everyone she encountered with joy. She was then and now the most precious of gifts and an angel on earth as much as she is an angel now away from our sight.”
Ms Twomey said that Ava lit up every room she went in to in her short life.
“Her enthusiasm for life bubbled over and when she was well, she made the very most of every opportunity to be involved in everything. Yes, the seizures butted in but she never gave up and that became the family mantra; never give up, Ava never gives up, so we won’t either.”
Vera said that Ava had an incredible ability to “fight back and recover that was so utterly inspirational.”
“Her bravery in the face of daily struggle was clear from the early days and she never quit she would open her eyes after an episode and it was there in her eyes every single time hi mummy I’m back.
Ava’s school friends and teachers meant the world to her. Going to school was a joy for Ava when she was well enough to attend.”
She said that Ava had a wonderful relationship with her father Paul, her siblings Sophia, Michael, and Elvera Mae and her ‘Nana Kitty.”
“They all say that Ava gave the best hugs. One could write literally pages of the funny and fabulous nature of our little girl was.
She was brave, she was kind, she was determined and we were blessed to have her love for the time she was on this earth. She changed our lives, made us better,she never gave up and to have the privilege to be part of her family was probably the greatest gift anyone could ever receive.”
She said she was proud that the troubles experienced by her daughter had led to progress in the lives of other patients in this country who can now avail of medicinal cannabis.
Coroner Philip Comyn said that whilst Vera and Paul stated that they were privileged to have Ava in their life the youngster was “equally privileged” to have has such a good family.
Addressing Ms Twomey he said that whilst he had never met Ava he felt like he had “lived next door” to her because of her beautiful statement about her daughter.
He extended his condolences to the family following their loss. Condolences were also offered by Sgt Fergus Twomey, Ms Daly on behalf of CUH and the jury. Mr Comyn also praised medical staff who had helped Vera throughout her life.
Ms Twomey, who is a mother of four, previously said that the 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.
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. Seven years is a long time.
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 have varied in extent and severity, but each one was an agonising experience, full of pain and terror.
"THC changed her life and is the most humane form of medication."
