My whole world changed with one phone call in August 2010. My eldest son, Stephen, had died suddenly. The sheer disbelief, shock and bewilderment was powerfully overwhelming. How could that be? He was a fit, healthy 38 year old guy with no cares in the world.
Steve was brain damaged following immunisation at 3 months. As a result he had learning difficulties, behavioural problems, epilepsy and Asperger syndrome. I had never had any dealings with these issues and so began this journey in life. Endless appointments with various health professionals, hospital admissions and medication changes. Despite his difficulties, he was a happy guy and lived his short life to the full.
In the weeks and months after the funeral, I had this desperate, overpowering need for answers as I was just left feeling empty. I had never heard of SUDEP, no-one told us you could die of epilepsy. I rang the coroner and said ‘you don’t die of epilepsy!’ I needed clarification. I had not heard of epilepsy nurses, certainly through Steve’s teens there was no professional involvement, just repeat prescriptions. Apart from family and friends, I had no access to any help, nobody signposted me in the right direction. I sometimes felt that everything had been such a waste: Steve’s life and struggles, the fight for his rights, overcoming all sorts of issues and ensuring his life was safe, happy and secure and then he died unexpectedly. I resorted to the web and found SUDEP Action. I learnt more information, had support, and met others who had been through the same pain and devastation as us. Just knowing that the helpline was there was a bonus and it was nice to know people cared.
I wanted to raise awareness and try to help prevent other families from going through the anguish and despair that my family and friends had been through. Any bereavement is devastating, but to not only lose a child – as Steve was – but to lose them to epilepsy when they are otherwise healthy is incomprehensible. I had a strong desire to be active and became a Volunteer Ambassador for the charity. I met with MPs, MSPs, the coroner and procurator fiscal and attended meetings and conferences. My campaign has taken me to Downing Street to a reception hosted by SUDEP Action, in the presence of Samantha Cameron wife of the Prime Minister. I recently started a new positon as Development Officer for Scotland in order to continue raising awareness, signposting to the Epilepsy Deaths Register and working with other members.
People ask me how I cope. That is easy to answer; you cope because you have no choice and you have to go through the process. I honestly believe that Steve led me down this path, not only during his life, but in death. He is urging me on. Steve made me the person I am today and I continue on this truly inspiring journey.
As the song goes ‘The road is long, but I am strong’.
Global Conversation 2014