Ava was born on the 26th of November in 2009. A beautiful baby girl. At just four months old she suffered her first major seizure. It lasted more than 45 minutes. Baby Ava was rushed to hospital where tests resulted in her being diagnosed with Dravet syndrome – a rare and extremely severe form of epilepsy.
For Ava: An Incurable Illness, a Reluctant Activist, An Ongoing Campaign is the story of Ava’s battle for life with debilitating and life-threatening seizures and the lengths her parents had to go to get her the medicine she needed.
Paul and Vera Twomey, Ava’s parents, were told it was unlikely she would live past three. One pharmaceutical drug after another was tried and failed, and before long she was on more than 11 medications. During this time Paul and Eva were in touch with other parents of children with Dravet syndrome around the world. They started to hear about medicinal cannabis and the amazing results this was having for children like Ava in other countries.
Refusing to give up on their beloved daughter – they reached out to MPs and Ministers – confident that anyone who heard Ava’s story would understand the urgency and ensure that this little girl was able to get the medicine she needed. But Vera and Paul faced an uphill battle. Promise after promise by officials and government Ministers failed to result in the medicine that Ava needed.
Eighteen seizures in eight hours
Just before her 6th birthday Ava had more than 18 seizures in 8 hours – the strain these caused on her young body resulted in her suffering a heart attack. When Vera and Paul were also told that all available drug options had been exhausted they knew they had to take drastic action.
Vera was driven to take desperate steps to highlight Ava’s case – she walked the length of Ireland from Cork to Leinster House in Dublin in protest to ask health minister Simon Harris for help in person. But even that wasn’t enough, and the family were left with no choice but to temporarily become ‘medical exiles’ and relocate to the Netherlands in order to legally access the medication that would save her life.
However, this is a story with a happy ending. Ava now has access to the medicine she needs at home in Ireland and will celebrate her tenth birthday this Christmas – she is able to go to school most days and lives pain-free and with a real quality of life all because her Mum and Dad were determined never to give up on her.
This compelling personal story tells of the lengths a parent will go to for their child’s health and happiness. Vera hopes that Ava’s story will bring hope to others, raise awareness of the truth about medical cannabis and break the stigma surrounding this life-saving drug.
Exclusive articles and interviews available:
Vera Twomey is available for expert comment, interview and to write by-lined articles on a number of different topics, including:
- “I fought the law…”: One woman’s inspirational campaign to change the law
- The ripple effect – the true story of how one person can create a nationwide movement
- Supermom: How to keep going in the face of incredible adversity
- Walking to change: The story of a mother’s 200km march to take on the government
- The truth about medical cannabis
- The reality of caring for a child with epilepsy
- Attitudes to medicinal cannabis in other countries
- Life as a ‘medical exile’
For Ava: An incurable illness, A reluctant activist, An ongoing campaign by Vera Twomey is available on Amazon priced £9.