SCHOOLGIRL Lucy Morgan used to love to dance and swim, but 18 months ago her life was devastated by an extremely rare condition.
The seven-year-old, from Chester-le-Street, suffered a huge fit that could have killed her.
She survived, but was left brain-damaged, partially sighted and unable to walk or talk.
It was caused by a recently discovered genetic disorder called autosomal dominant acute necrotising encephalopathy (Adane).
She also suffers from another rare genetic problem called homocysinuria, in which too much protein gets into her blood, which could cause blood clots in later life.
Adane means an attack by a virus such as flu could lead to another, potentially fatal seizure, and Lucy must take a cocktail of medicines to keep bugs at bay.
Lucy, who has made progress and can talk, but still needs a wheelchair, has returned to Bullion Lane Junior School.
Her mother, Sheena, a former call centre worker, said: “They say that with a lot of the right physiotherapy, she might walk again.
“She did ballet and tap. She remembers all that and would love to go back to it.
“Lucy is the only case of Adane in the UK that we know of and there are two in the US.’’ Her father Darren, a selfemployed window fitter, said: “She has come a long way since it happened, but we need to get things sorted out so she can have a proper life.’’ Lucy, who has a 15-year-old brother, Daniel, cannot get upstairs in the family home and sleeps on the settee in the living room with her family having to watch TV with the sound turned down so they do not disturb her.
She goes to the University Hospital of North Durham, in Durham City, twice a week for a bath.
Her family aim to build a single-storey extension to their three-bedroomed home to create a bedroom and bathroom.
Family friend Neil Cunningham, a surveyor, has drawn up plans, and the family have been awarded an adaptation grant, but it does not cover the full cost, so they must raise about £10,000.
They need to raise the money quickly so work can start by the end of March, otherwise they will have to reapply for the grant.
A fundraising charity night will be held at 7.30pm on Friday, January 22, in Osborne Workingmen’s Club, Chesterle- Street, which will feature singers, a comedian and an auction and raffle of prizes donated by local businesses.
Tickets are £5, on 07546-407720.
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