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 on Thursday 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 per cent reduction in Ava’s seizures.”
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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 licensed for use in this country. The recommendation will be known as Ava’s Protocol.
The inquest heard that Ava was initially hospitalised here 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 20 seizures a day before she was prescribed medicinal cannabis.
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.
The family ultimately went to live in The Hague in the Netherlands in the latter half of 2017 where Ms Twomey again received a prescription of the drug for her daughter.
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.
“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 and she said that Ava had an incredible ability to “fight back and recover that was so utterly inspirational.”
She said that Ava had a wonderful relationship with her father Paul, her siblings Sophia, Michael, and Elvera Mae and her ‘Nana Kitty’.
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 had such a good family.
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.
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