Help reverse the rare genetic condition Rett Syndrome with a pop-punk, ska-filled night at The Wedgewood Rooms

But it’s only very recently that the 13-year-old has been able to ask for the songs she wants to listen to. This is because Lucy has Rett syndrome, a rare genetic condition which means she is effectively locked in a body which doesn’t respond properly to the signals from her brain.

Lucy was diagnosed with the condition at 18 months old by doctors at Queen Alexandra Hospital in Cosham.

The Portsmouth family provide Lucy with round-the-clock care, but the recent breakthrough has come thanks to them being able to buy her an Eye Gaze computer following a successful fundraising campaign.

Through tracking the user’s eye movements, the technology enables them to communicate with the wider world.

“It’s been pretty massive,” says Dan Sawyer, her stepdad. “For example, she’s able to choose what artists she wants on YouTube, as well as what song.

“But there’s also different things like what she can choose. Lucy's very TV-centered so she can choose lots of things on the TV, and we action those but at the same time she’s learning basic phrases just like ‘more’, and ‘finished’, ‘yes’ and ‘no’.

“On my birthday she randomly said the word ‘birthday’ which was just heart-melting.

"There’s other stuff as well because it’s got little symbols you can choose for words, so she’s building up vocabulary. It’s a bit like learning a language, but she’s flying through it. She can use the computer really well now, it's just a case of getting her to recognise what a lot of the words are but it's made a massive difference.”

Even though the family have only had the Eye Gaze for a few weeks, they’re already seeing significant changes in Lucy.

“Lucy’s mood has been way better. She’s been so much happier, because she’s able to actually effectively communicate what she wants. She’s not in a position to say: ‘My tummy hurts, can I have Paracetamol?’ yet, but she’s able to say ‘Justin Bieber’ and then she’ll go ‘Sorry’ [one of his hit singles]. You’ll put it on and she’ll giggle, because she knows what she’s chosen.

“You can see on the screen where the mouse moves, what’s been highlighted and what she wants. You can kind of see her thought process as well. It’s really interesting, it’s a really clever bit of kit.”

For the first time, she can express when she’d like to go to bed, or let Dan and mum Katherine McCready know when she’s tired.

“She’s got an opinion for the first time, which is so important.”

And the family are grateful to everyone who donated after their story was picked up by the national press. The computer cost more than £10,000.

“One person donated a grand and a half, which was incredible. We actually ended up raising so much money we donated just over £1,000 to (charity) Rett UK because we had leftover money so we pinged it off onto their JustGiving page.

"And this is not a cheap bit of kit – the actual computer itself is like 10-and-a-half-grand and the stand for it is another £600 or something, so it was it's crazy.”

Dan and Katherine are ambassadors for another charity, Reverse Rett, which aims to do exactly what the name says – reverse the condition in those who have it.

“Katherine’s very much more active in the community than I am, helping out in Facebook groups, things like giving advice to other parents that need advice and she gets advice from them as well.

“Where the condition’s so rare everyone helps each other out. I think there’s about 70 ambassadors across the country.

“There is quite a community there of the families who support each other, and even if you’re not geographically close, you can offer advice and that support.”

However, there have been promising developments in treating the syndrome with clinical trials on a gene therapy that has already had some successes.

“They’re actually trialing it on girls at the minute,” says Dan. “It’s been a long time coming, it’s been quite a slow process, and there’s been a few setbacks. But generally the news is positive – some girls have been able to start using their hands again or say words.

“They’re optimistic but realistic.”

To help things along, Dan has arranged a fundraiser for Reverse Rett – LucyFest, at The Wedgewood Rooms in Southsea on Saturday, August 2, with all money raised going straight to the good cause.

“We did a LucyFest before where we raised money for an off-road wheelchair for Lucy which we use regularly for things like the park, going on woodland walks – and we actually used it at Victorious Festival last year when Offbeat Offensive played.”

Dan is a musician and plays in several local bands – including the popular ska act Offbeat Offensive, who will headline the night.

Also on the bill are Mandark with pop-punk anthems and ska from Skaraman.

“It’s going to be a pretty positive, upbeat night,” says Dan, “lots of ska, pop-punk, lots of horns, lots of dancing – good times!”

Tickets cost £10. Go to wedgewood-rooms.co.uk.