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WHAT does home mean to you? For most of us, it's a place to share with family and a sanctuary to relax at the end of the day.

For Charlotte Walsh and her children, home means so much more. It's where she cares for her 15-month-old daughter, Ruby, who suffers from spina bifida.

Now Charlotte, who is also mum to Jack, nine, is sharing her experience of life at home, in Butneys, Basildon, in a new book giving a snapshot of family life in the UK.

The family were also thrilled to welcome celebrated photographer Mary McCartney, daughter of Sir Paul McCartney, to their home to take pictures to accompany the article in the book, called Life at Home.

Charlotte became aware of the project after it was advertised on a chatroom on netmums.co.uk for parents of disabled children.

She said: "It was asking for families who would like to take part to get in touch.

"I wanted people to realise a home isn't just a home for some people. It's where you care for people.

"I'm Ruby's full-time carer, medically, as well as being her mum."

Ruby's condition, spina bifida, is a developmental birth defect and doctors have been unable to tell if it was caused by a lack of blood to the brain when she was either born or a week before birth.

She has to be fed with a tube straight to her stomach, because she cannot understand the sucking action, and she has hearing loss in both ears. The family has recently found out Ruby is also blind.

Mrs Walsh said: "She reacts quite a lot to touch.

"It's very much a touching relationship with her and we're constantly holding her because if we didn't she doesn't know where we are. Jack is very understanding because we sometimes have to rush off to hospital and he has to go and stay somewhere.

"He helps me out a lot, getting equipment and he is really good, but it's hard for him."

After leaving her details with the website, Mrs Walsh was contacted by Mary McCartney who turned up at her doorstep the next day to take some photographs.

Mrs Walsh said: "She was lovely.

"I wasn't really sure who she was. I just knew I recognised the face, but I didn't want to say, are you Paul McCartney's daughter?' "It wasn't until a couple of weeks later that I realised who she was. I was just talking to her about normal things.

"Jack loved the attention and she put us completely at ease.

"She said, just do what you'd do normally and pretend I'm not here', which I did."

The resulting UK at Home book is released on Thursday and is sponsored by Ikea as part of its 21st birthday celebrations.

Mrs Walsh has already been sent a copy of a picture by Mary McCartney, of Ruby smiling at the camera.

Mrs Walsh said: "I wanted it to represent a family. but it's nice to get some professional shots of Ruby because it's hard going somewhere like a studio because she has so many needs.

"We don't know how long we've got Ruby for.

"Hopefully a long time, but we will always have these photos and it's nice to see her smile."

2:36pm Monday 14th April 2008

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