Stevenage couple visit 10 Downing Street for epilepsy research appeal launch

John and Bernie McDonnell visited a reception at 10 Downing Street on behalf of Sudep

John and Bernie McDonnell visited a reception at 10 Downing Street on behalf of Sudep - Credit: Archant

The parents of a woman with epilepsy who died suddenly have attended a charity reception at 10 Downing Street to help raise awareness.

John and Bernie McDonnell from Stevenage attended the event on behalf of charity Sudden Unexpected Death in Epilepsy (SUDEP) Action.

Their daughter Fiona died in 2004 at the age of 28 from SUDEP – a condition in epilepsy sufferers commonly caused by seizure-induced hypoventilation.

The reception was hosted by Prime Minister David Cameron’s wife Samantha and coincided with the launch of an appeal for research into a monitoring device that could be used to detect and prevent cases of SUDEP.

An estimated 500 people with epilepsy die as a result of SUDEP every year in the UK.

Mr McDonnell said: “When our daughter died, we could not imagine how our life would carry on without her. Life is never the same after you lose a child. We still grieve but we are also proud to be involved with helping to prevent unnecessary epilepsy deaths.”

Jane Hanna, chief executive of SUDEP Action, said: “We are very grateful to Mrs Cameron for generously hosting us and helping us raise awareness of this issue. At the moment there is no reliable method to detect SUDEP in the home with the consequences being that there are hundreds of preventable deaths every year.

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“We need at least £165,000 to test this device on people with epilepsy as the next step towards a system that may be highly reliable for prevent SUDEP. We are grateful for supporters such as John and Bernie who continue to raise funds for the charity and make such projects possible.”

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