Woman with rare condition raising awareness

A woman has completed a challenge to walk 5km a day during the month of May in order to raise funds and awareness of the rare condition she has.

Lucy Murphy, 25, from Exeter, has Dravet Syndrome - a form of epilepsy - and her walk raised money for the charity Dravet Syndrome UK which supports families of those with the condition.

Dravet Syndrome causes learning disability and a spectrum of associated conditions such as autism, ADHD and speech difficulties.

Ms Murphy's mother, Denise Murphy, said her daughter's accomplishment was a "miracle" after frequent ambulance trips and admissions to intensive care throughout her life.

Ms Murphy lives in supported accommodation and has a carer who helps her daily.

She was diagnosed with the condition at the age of three, having had her first seizure at four months old, and she now has the comprehension ability of an eight or nine year old, her mother said.

During her early years she was "constantly seizing", Denise Murphy added.

"We knew every ambulance crew in the area," she said.

"We made the decision to move house to be closer to the hospital and never travelled further than a 10-minute radius of our home in Exeter unless we had a nurse with us.

"Lucy is currently in the longest seizure-free period of her life and we never thought we would be in this position so it's a miracle really."

Ms Murphy said she was trying to do as much as she could to raise awareness.

"If this can spread awareness to others it will make me happy to know I was a part of it," she said.

Claire Eldred, the Cornwall-based director of Dravet Syndrome UK, also took part in the challenge.

"What Lucy is doing is incredible," she said.

"Dravet is a spectrum and... over 50% of adults need to use a wheelchair, over 50% will have severe to profound intellectual disability and many are non-verbal.

"So it is actually pretty remarkable for a person with Dravet Syndrome to be able to take on something like this."

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