Jury in Ava Barry inquest recommends national protocol to oversee ...

Ava died of bronchopneumonia in Cork University Hospital, age 13, at 2.40am on May 27, 2023.

She had suffered a rare genetic condition called Dravet’s Syndrome, a form of epilepsy which caused her to have daily seizures.

After a long campaign by her family, a ministerial licence was granted for Ava by then health minister Simon Harris to receive medicinal cannabis in 2017.

Medicinal cannabis had resulted in a 50% – 70% reduction in Ava’s seizures, Cork Coroner’s court heard.

“Ava began to improve, she smiled, she spoke, she sang. It was like a miracle in their lives,” barrister for the family Doireann O’Mahony said.

But her condition deteriorated significantly over some weeks in 2023, during which she lost a lot of weight, dropping to just 15kgs.

She was admitted to the Bon Secours hospital in Cork suffering respiratory problems and low weight where she was stabilised. But as she was acutely unwell, she was transferred to Cork University Hospital.

Cork Coroner’s Court heard that there was neither a local or national policy on how medicines like cannabis granted under a special licence are administered in hospitals.

Because of the strict conditions they are permitted under, the doctors, who have not prescribed them, can be nervous about administering them, the court heard.

No records of the administration of two medicinal cannabis products – THC and CBD – prescribed to Ava were kept for some days in CUH at the beginning of Ava’s care there because the licence to administer the medications was not granted to any doctors within the hospital and Ava’s mother, Vera Tomey, was administering the medicine.

Cork coroner Philip Comyn said that there appeared to be a gap in national policy regarding the administration of medical cannabis in hospital settings.

The jury of four men and three women returned a verdict of death by natural causes.

They recommended the introduction of a new national policy for greater supervision of the administration of medications subject to a special licence be carried out and that it be called after Ava.

Let Ava’s Law be her legacy, Ms O’Mahony said

Barrister for CUH Caoimhe Daly said that doctors in CUH had gone to great lengths to care for Ava and to communicate with her family and her wider medical team when “trying to break the cycle of infection” that Ava was suffering while in hospital.

She extended her sympathies to the family on their loss.

Coroner Philip Comyn said that Ava suffered from a debilitating and ultimately terminal disease known as Dravet Syndrome.

“Ava even reaching 13 years was due to herculean efforts by her parents," Mr Comyn said.

But Dravet’s is a nasty, pernicious disease that is progressive, he added.

Ms Twomey 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 her young daughter.

Ms Twomey said that her daughter was “one of the most spectacular people” she 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,” Ms Twomey said.

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.

“Ava lit up a room wherever she was, be it at home or away."

“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.

“Her bravery in the face of daily struggle was clear from the early days and she never quit.

“Her family were there to love her and help her and had the extraordinary privilege of being with someone who was not ordinary like the rest of us but quite the opposite the most impressive and powerful loving person I have ever known.

“Our Ava, we miss you, we love you and you will always be with us, just out of our sight is all.”