Woman with rare condition takes on charity challenge to help others

A WOMAN who has a rare form of epilepsy took on a challenge to walk and jog up to 5k every day in May to raise funds and awareness for others living with the condition.

- by ECHO REPORTER

Lucy Murphy, from Exeter, has Dravet syndrome, a rare, life-limiting, form of epilepsy.

The 25-year-old took on the challenge on behalf of Dravet Syndrome UK, a national charity which supports families living with the condition. To date she has raised almost £900.

As well as seizures, Lucy has an intellectual disability, meaning she has the comprehension ability of around eight or nine, autism and dysautonomia.

She was during the challenge by the team where she lives at Rainbow House, a supported living project for young adults.

Dravet syndrome is a rare and devastating neurological condition which encompasses severe epilepsy, learning disability and a spectrum of associated difficulties. It occurs in around one in 15,000 births in the UK.

Lucy had her first seizure at four months and was diagnosed at three years old after months of seizures and dozens of blue light trips to hospital.

At 22 months, after a particularly huge seizure, Lucy spent two weeks in intensive care and was so ill that it took six months for her to recover. She has been admitted to intensive care on 18 occasions.

The patterns and frequency of Lucy’s seizures have changed over the years, and Lucy has not had a seizure for the past 18 months, the longest seizure-free period she has had.