Why SUDEP Action matters to me
Patricia Odd shares her experience of finding SUDEP Action after losing her daughter Katy.
My daughter Katy died of SUDEP in April 1997, at the age of 19.
She had lived with epilepsy since she was eight years old after having meningitis. She was well cared for but was never completely free of seizures. However, she lived a good life, went to a highly selective grammar school in London and took every opportunity to travel and enjoy life. She had been at university studying radiography for six months when she was found dead in her room.
Unlike most people at that stage, I had heard of SUDEP and through the hospital I was able to contact Jane Hanna and the few other people who had started the charity. Kate died two days before the landslide election when the Conservatives were ousted from our very blue area of London. I subsequently contacted our new MP, Stephen Twigg, and he invited me to tea at the House of Commons and later re-started the All Party Group on Epilepsy, which had once been active but had ceased to meet. I was invited to speak at the first meeting of the newly convened group; not an easy task!
Over the years we have tried to raise money for SUDEP Action as often as we could. We didn’t do any onerous bike rides or marathons, but we did run a Strictly Fun Dancing evening for our local Rotary Club which was a great success.
Written by Patricia Odd, Katy’s Mum
