Beaming Ella, eight, battles rare condition to enjoy her Norwich mod fundraiser

With a beaming smile on her face, it's hard to imagine the difficulties Ella Kett has already overcome in her short life.

During the eight-year-old's worst days, her mum Faye started planning her daughter's funeral while waiting at the hospital.

But Ella, who has the rare genetic condition Cornelia de Lange Syndrome (CdLS), is getting stronger as she gets older and was the centre of attention at a Norwich fundraiser for her on Saturday.

Mod One, in Magdalen Street, welcomed London bands The Theme and Mr Bridger for an acoustic gig in store.

This was followed by an evening event with both groups performing at Mojo's, in Prince of Wales Road, free of charge.


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Mum Faye Kett, of Garden Place, off Magdalen Street, said the fundraising efforts of Mod One to help Ella were 'amazing'.

The 36-year-old has been collecting cash to help fund Ella's doctors' consultations and to attend international conferences, which take place every two years and help increase the knowledge about the little-known condition.

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Miss Kett said: 'They are just finding out new things all the time and the more money they have to research, the more we can find out. I am not saying there will be a cure but you never know.'

Ella attends the Parkside School, for children with learning difficulties and complex needs, in College Road, Norwich, and is one of an estimated 300 people with CdLS in the country.

People with CdLS have multiple disabilities, including learning difficulties.

Ella has a high pain threshold, which can make it difficult for her mum and doctors to detect what is wrong with her. She was clinically diagnosed by doctors three years ago, but it was not until last October that it was officially confirmed.

Miss Kett said it had been difficult not knowing exactly what was wrong with her daughter, particularly in the early years.

She said: 'It was awful. She was in hospital several times. There was one incident when I was in the hospital planning her funeral.

'She was very poorly and sick as an infant but as she's got older, she's got stronger – and nothing gets her down any more as she's so robust to it all.'

Jane Gosling, of Mod One, said she first met Ella while she was her teaching assistant at school, had stayed friends and now the youngster was Mod One's charity.

She said: 'There's always a pot in the shop collecting for her.

'As she is so local, people come here, meet her and whenever we do a competition it's always Ella that pulls the name out of the hat.

'She's touched all of our hearts and that's why we got involved.'

Have you got a health story? Call reporter Kim Briscoe on 01603 772419 or email kim.briscoe@archant.co.uk

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