3 June 2018
By Mary Bermingham
Campaigner Vera Twomey is the May Cork Person of the Month in recognition of her courageous fight for her daughter Ava to receive treatment for a rare form of epilepsy.
Ms Twomey rose to national prominence during a three-year campaign to secure access to medicinal cannabis to treat Ava’s rare form of epilepsy, called Dravet Syndrome. The condition is potentially lethal, and has previously pushed Ava into cardiac arrest and an eight-day coma.
Her campaigning included two 260-kilometre walks from Cork to the Dáil to capture the government’s attention to Ava’s struggle. She also mounted a very successful social media campaign and husband Paul had to live abroad with Ava to guarantee supply of her necessary medicine.
Ms Twomey successfully campaigned for Health Minister Simon Harris to grant a special licence which allows Ava to receive medicinal cannabis treatments.
Further to securing the right for Ava to receive the treatment, Ms Twomey also successfully lobbied the government to include the cost of Ava’s €12,000 a year treatment under its long-term illness scheme.
Vera and her husband Paul had been paying for Ava’s treatment out of their own money, alongside donations raised through a GoFundMe page.
On the back of her campaigning, the government has committed to looking into introducing legislation to cater for prescribing cannabis for medicinal purposes. Vera continues to campaign for others around Ireland who are in need of medicinal cannabis.
Awards organiser Manus O’Callaghan said Ms Twomey is a very deserving winner of the Cork Person of the Month award, “The whole country was captivated by Vera’s fight for Ava to receive the required medicinal cannabis treatment she required to treat her condition.
“She was fearless in her pursuit of this and she’s a lesson to us all in perseverance and tenacity but as well as that the love she has shown for Ava is inspirational.”
Vera Twomey said, “I’m honoured to receive this great award and it’s a further example of the incredible support I’ve received from the Irish people, and especially from Cork County and City, all throughout our journey.”