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Skelmersdale epilepsy campaigners head to Downing Street

Joseph and Anne Aindow lost their son to the condition in 1999

Joseph and Anne Aindow

Parents of a man who passed away from epilepsy, have attended a reception in Downing Street to encourage research into the condition.

Joseph and Anne Aindow from Birch Green in Skelmersdale have been ambassadors for Sudden Unexpected Death in Epilepsy (SUDEP) since their son Damian passed away in 1999.

The pair attended Downing Street reception, held to launch the charity’s appeal for research into a sleep monitoring device that could help prevent unexpected death.

Funds raised from the appeal will sponsor research into the device, which will alert carers to dangerous apnoeas that can cause sudden death.

It is a miniature wireless apnoea detection device that is proven to detect apnoeas.

During the reception, Samantha Cameron met with charity supporters and staff, including the Aindows.

Damian was only 30 when he died, leaving his parents distraught.

Anne said: “When Damian died we couldn’t imagine how life could carry on without him.

“Life is never the same after you lose a child but we’re very proud to be involved with SUDEP action and help prevent unnecessary epilepsy deaths.

“If we had had a device like this one, it’s possible that Damian’s life could have been saved, so we are very passionate about spreading the word and helping make a difference to other sufferers’ lives.

“Damian was a very clever boy who had a good life.

“He loved to play the flute and the recorder and was very loving.

“As far as he could, he tried not to let his condition affect his life and tried to do everything he possibly could.

“He was very involved in Scouting and we were just so proud of everything he did. “

Jane Hanna, OBE, chief executive of SUDEP Action, said: “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 preventing SUDEP.

“We are incredibly grateful for supporters like Joseph and Anne who continue to support the charity and help make such projects possible.”

Anne said: “We were honoured to be asked to go to Downing Street and it was all very surreal, but it was a lovely day and hopefully the charity will benefit – they do amazing work.”