A year on, the gift that changes Chelsie's world

From left, Jacob Kennard, Gavin Moon, Ian Doyle and Sarah Talboys-Smith with Shanon Rees and Rodney Watson at the front
 at the Southsea Village in Palmerston Road Picture: Habibur Rahman

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Last Christmas marked the start of a difficult time for Chelsie Jones and her family.

But they hope the new year will be better than the last – and a kind gift is already making a difference to their lives.

A motorised scooter is helping Chelsie get out and about more, just in time to make this Christmas a happier one than the last.

Chelsie has cystic fibrosis – a condition which causes her lungs to clog up, making it hard for her to breathe.

The 18-year-old gets tired quickly, making it difficult for her to enjoy all the normal things other teenage girls her age get up to.

While the family try to keep life as normal as possible – and Chelsie is kept busy with college, work and hobbies like amateur dramatics – certain things had become almost impossible, like shopping trips.

When Chelsie's occupational therapist suggested contacting the Variety Club for help in providing a scooter, they didn't know about the charity's work.

'I didn't really want a scooter, I didn't think it was right for me,' says Chelsie.

'I can move, I'm not paralysed or anything, and people would look at me.

'But I needed a scooter and we couldn't afford it. My occupational therapist said about the Variety Club and put in an application for me and a couple of weeks later they contacted me.

'They are really expensive – this one's 699 – and it's been great.

'I can go out with my mum more down town now. Before, I would go down there and come back because I was exhausted.'

Chelsie adds: 'I can get in it and go out. The main thing is we can go out and have a cup of tea and something to eat and whatever.

'It didn't make me feel sad that I couldn't go to town, it was just I was tired and wanted to go to sleep.'

Mum Pam has also enjoyed the difference it has made to Chelsie's life.

'When the kids get to this age they go shopping but we couldn't do that,' she explains.

'She couldn't manage that. We never had the opportunity of going out to shop. Now we can. She's scootering through town now and I'm running behind her.

'We used to plan where we would go and get what we needed and come home. There wasn't the joy of going from shop to shop. Now, she can go to town and we can go together.

'We were down there for three hours the other day. It was really nice. She has the ability now to go out on her own.'

Chelsie lives in North End, Portsmouth, with her family, including step dad Duncan and sisters Jorja, 13, and Carys, three.

There's no cure for cystic fibrosis and over the years the disease has put a real strain on Chelsie's lungs.

But in spite of the life-limiting illness she's doing a beauty therapy course at South Down College and is an active member of the Portsmouth Players. The am-dram group is currently in rehearsals for its next production, The Music Man, and Chelsie loves to sing and dance.

It's incredible just how much she does do considering she often has to rely on an oxygen tank to help her breathe.

Yet despite her cheerfulness, this year has seen her health deteriorate quickly and she missed two months of college at the start of the year. The teenager has been in hospital for at least two weeks every three months.

'She's been in hospital more times than out this year,' adds Pam.

'Some years are bad, some years are good. This year has been bad.'

Chelsie explains: 'It's not been a great time. At the beginning of Christmas Eve I felt poorly so I went to bed. I was out for the count. Normally I can't sleep because you're excited about Christmas but I felt really ill and on Christmas Day I felt a bit sick and I got worse and worse from then.

'I'd had an allergic reaction to the antibiotics they'd given me. They didn't know what it was at the beginning, it was a guessing game.

'I was being sick all the time and had this massive rash. I was in hospital for about a month.'

Thankfully, the scooter will help Chelsie during her regular visits to Southampton General Hospital: 'There's a WH Smith and a coffee shop there. Sometimes I don't want to go out but at other times I don't want to sit in bed all day. The nurses haven't got time to take me around but I'll be able to get out and about.'

If Chelsie's had to adapt to being in hospital so frequently, then it's no different for her family.

The youngster was diagnosed with cystic fibrosis when she was just a baby so she really doesn't know life any different.

'This is how our lives have been for the last 18 years,' adds Pam.

'Obviously she's paramount. Her health is paramount. But we live as normal a life as we can make it.

'Of course when she's poorly, she absolutely has to come first and we have to juggle things with the other children. We go up to see her in hospital every day and that's just how it is.

'Just because this is our life doesn't mean that other people don't have difficult things to deal with. We deal with ours, it's how it is. It doesn't mean we have it any harder than anyone else.

'The girls just fit in with it. Jorja has grown up with it and Carys is only three so she doesn't really understand.

'I don't think our family life is any different to anyone else's.'

Chelsie agrees: 'This is my life, the cards have been dealt, it's the way it is. I've always had it and I've had to grow up quickly because of it.

'I have oxygen every night and if I'm not having a good day I'll have it during the day. Sometimes I feel like nothing helps. It doesn't make it go away, it makes it easier.'

The scooter arrived at the end of last month and is a bit like an early Christmas present for Chelsie.

As the new year approaches, she and her family hope 2011 will work out better than 2010.

And as progress is made in caring and treating those with cystic fibrosis all the time, there's always the chance that something will come along to help Chelsie.

'There's always hope,' stresses Pam.

'We were told life expectancy was late teens, now it's thirties. It's increasing all the time. We just get through life day to day and do what we've got to do.

'In 18 years there has been a lot of advances. Nothing will reverse the damage that's already been done for Chelsie. But it might stop further damage in the future.'

Chelsie says: 'There is going to be something to help someone else and as long as that happens one day that's OK. I've done the clinical trials, you've got to make your contribution but none of this will be for me, it will be for the new kids.'

'It's amazing how resilient these kids are,' adds Pam.

'I hope the next year will be better than the last year.

'She's extremely lucky that they've given the scooter to her. I'm very grateful. It's nice to see her have the independence that normal 18-year-olds have. She didn't get that.'