BY BRYAN WALL
VERA Twomey, the woman who became a household name due to her campaign to gain access to lifesaving medication for her daughter has written a new book, detailing her struggle.
For Ava, published by Mercier, was the best selling, Irish published, non-fiction book last week.
Vera rose to prominence after she twice walked from her home in Aghabullogue to Leinster House to protest her daughter’s lack of access to medicinal cannabis. Ava, who is nine, has Dravet Syndrome, a condition which results in her suffering from multiple seizures a day. In some cases the seizures are life-threatening.
Medicinal cannabis eliminated Ava’s seizures. But Vera was forced to import the medication from the Netherlands because the government refused to grant her and her daughter a licence.
Once she was even stopped by customs at Dublin airport who confiscated the medication from her.
Vera and her family were eventually forced to make the radical decision to relocate to the Netherlands in June 2017 so that Ava would have regular access to the medication. After much pressure, however, the government finally granted her a licence in November of the same year. The government now issues her a licence every three months which allows Ava’s family to travel to the Netherlands and bring back her life-changing medication. Because of this, Ava has been able to receive treatment in her home in Cork.
Vera details this and much more in the book. She told The Southern Star that as a result of her access to the medication, Ava is now doing great. Her seizures are under control and she now attends school in Macroom where she is very happy.
Vera related how writing a book ‘takes a lot of putting together’.
She began work on it in January 2018 and wrote it ‘piece by piece’ with no ghost writer.
She related that there are ‘sad and humorous’ moments in the book but she has attempted to keep it balanced. Her main reason for writing it was to highlight the ‘tremendous struggle to achieve safe access to medicines that Ava needed’.
Part of this struggle, the mum said, was that ‘there was so much opposition to such a genuine medicine’. And for this reason she felt ‘it was important to show people the reality of what medicinal cannabis can do’ for people like Ava.
Social media, she argued, only shows ‘a snapshot of what people are going through’.
But with a book, she said, writing the story down from start to finish is ‘more beneficial’.
And although she didn’t view writing the book as a form of therapy, after years of struggle she saw it as something ‘that could do good for other people’.
Without treatment ‘the prognosis for Ava’s future was so bleak’.
Vera fears that other children might be in a similar situation with a similar outlook.
She argued that medical professionals could be telling families that there’s no hope for those little kids either. But this isn’t the case she said adding that medicinal cannabis can work for some people and is ‘something that should be explored’.
And she believes as well that ‘a personal story might be of some assistance or comfort’ to people in such a situation.
As a result, it’s important to tell Ava’s story: ‘It could save other children an awful lot of suffering’.
Taoiseach Leo Varadkar is also discussed in the book. Vera met him when she won the RTÉ People of the Year Award in 2018 and she spoke directly to him from the podium while receiving the award.
She called on him to legalise medicinal cannabis while he looked on and she related that in her family’s experience, the government had a ‘lack of empathy’ when it dealt with them.
Going forward her aim is to continue to push the government to give people access to the medication.
She insisted that the issue cannot be allowed to fade away now that Ava has been granted access.
The book can play a part in this, she feels. Overall, she is extremely hopeful about the message in the book. She believes that it’ll do something positive for other people to see what her family went through.
‘You can do the medical research but hopefully a personal story might be of some assistance or comfort to some people,’ she said.
And above all it will show people what can be done with an awful lot of determination and a fighting spirit.
*For Ava (published by Mercier) is now available in local bookshops.