Astromoda, Ben Brookes and Marley Blandford to play Lucy Fest wheelchair fundraiser for Portsmouth girl with Rett's syndrome at The Gaiety

Lucy Glenn (pictured with mum Katherine McCready and step-dad Dan Sawyers) has Rett syndrome, a rare genetic neurological and developmental disorder which causes a progressive loss of motor skills and language.

As a result the 10-year-old needs a wheelchair to get around. But her current one is not fit for purpose and her parents want to get her a new one which will enable them to take the outdoor-loving girl more places.

The only snag is that it costs £3,600.

The family’s friends are putting on various fundraisers for the effort, but step-dad and musician Dan Sawyers has pulled together a special gig for the effort – Lucy Fest. The night will feature Astromoda, Ben Brookes, Marley Blandford and a band Dan has created for the occasion, The LFD Experience.

Dan has put on several charity shows over the years fundraising for Reverse Rett, the UK charity aiming to find a cure for the condition.

Having outgrown her last wheelchair, the family were given a new, basic model by the NHS’s wheelchair services about five months ago. However, says Dan: ‘The replacement they gave us, Lucy was too big for it, she didn't fit in it at all, her legs were hanging off and after a month it was already falling apart to the point where it was dangerous.

‘We made a complaint, and so did her school, and they replaced it. So the one we've got now is considerably better, but it's fairly fragile compared to a buggy-style wheelchair – it's rubbish on pretty much anything other than very smooth surfaces, it's hopeless on things like drop-kerbs and the little bobbles at pelican crossings.’

The family had tested an off-road wheelchair a couple of years ago and fallen in love with it – but their application to fund it through a charity was refused, which is why they have decided to fundraise it themselves.

‘For us it's a need,’ says Dan, ‘others might argue we already have a wheelchair, but this is so much better. It would be a game-changer.

‘I's a three-wheeler, and the frame is carbon-fibre so it weighs next to nothing, it’s properly balanced so it doesn’t put any pressure on her joints, and it folds up nicely so you can fit it in pretty much any car boot.

‘It was brilliant, but the problem was it cost £3,600, which we can't afford.

‘We thought, we've done the other gigs for the charity, so why don't we do this one as a fundraiser? It was [Lucy’s mum] Katherine's idea.’

Lucy Fest is at The Gaiety on South Parade Pier, from 7pm on Sunday, August 14. Tickets £10. Go to book.events/lucyfest.