‘If I could have my life again, I wouldn’t have it any different’

Chelsie Jones, 20, with her partner Glyn Whibley, 25, at their Southsea home. Picture: Malcolm Wells (13534-1482)
Chelsie Jones, 20, with her partner Glyn Whibley, 25, at their Southsea home. Picture: Malcolm Wells (13534-1482)
Dr John Steadman, archivist of Portsmouth History Centre based at Portsmouth Central Library     Picture:  Malcolm Wells

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Like any young couple starting their life together, Chelsie Jones and Glyn Whibley laugh, joke and tease each other as they remember funny moments and make exciting plans.

Chatty Chelsie recalls their first date and reveals how excited they are to be celebrating her 21st birthday with a trip to Florida next month.

And Glyn laughs, saying Chelsie is a talker. Sometimes, he says, it’s hard to get a word in.

They even joke about the inevitable arguments – Chelsie gave Glyn a bit of a hard time on a day out in ‘of all places, Legoland,’ he recalls.

‘I feel bad about that,’ adds Chelsie. ‘My mum said he deserved a medal.’

The couple are grinning about it now. But behind the smiles there’s a poignancy to every fond memory, silly story and joke.

Chelsie has cystic fibrosis, a cruel disease that affects the lungs and pancreas and robs young people of their health and lives.

At just 20, she has lost several of her friends to the illness. These teenagers were people Chelsie grew up with. They shared jokes and tears, as well as information and support.

So heading to Florida with Glyn and her family to celebrate her landmark 21st is very special.

‘It’s a massive thing for us,’ she says, sat next to Glyn in their Southsea home. ‘When I was younger they didn’t think I’d live past 16 and here I am coming up to 21. We are going to have a fantastic time.’

Cystic fibrosis affects the internal organs, especially the lungs and pancreas, clogging them with thick, sticky mucus that makes it hard to breathe and digest food. It leads to infections that attack the lungs.

Although Chelsie’s case is severe and she is sometimes very ill, she is doing okay at the moment and the couple have hopes for the future.

They manage to live with CF with a realistic outlook but also a large measure of humour. When Glyn talks about his girlfriend’s chatty nature he says: ‘It’s hard to believe she’s got CF, the way she talks. I always say Chelsie might have 36 per cent lung function but I reckon she must have lungs the size of a Mini.’

And Chelsie says that’s because they have learned to appreciate everything they have.

‘I’ve grown up doing that, appreciating things. I did a lot of dancing because exercise is good for kids with CF, and that became my life. I always say that if I had my life again I wouldn’t have it any different. CF has made me who I am. I wouldn’t have had my dancing and I might not have met Glyn.’

The couple were introduced by friends a couple of years ago,

Chelsie had been in a relationship that hadn’t worked and was worried about telling Glyn, now 25, about CF.

But she found he had a wisdom beyond his years. At 14 Glyn lost his dad to cancer and had to grow up fast. ‘It was okay, I liked Chelsie and it didn’t change who she was,’ he says.

‘It was like that with my dad. He had cancer but it didn’t change him as a person. He was still my dad.’

Now they are enjoying their lives together and accepting the huge challenges they face daily.

Chelsie has regular stays in hospital and is sometimes very unwell. ‘I’m tired, I can’t do anything but lay on the couch. Then I feel very down,’ she says.

When she was growing up her mum Pam gave her a type of physio which helps the patient expel the mucus. Now she does this with breathing techniques.

Despite her bouts of illness and prolonged coughing fits, Chelsie works two days a week and helps out at a primary school.

Glyn, an electrician, says she’s amazing. ‘She just gets on with it and she’s always looking out for others.’’

Chelsie thanks Pam for her positive outlook. ‘I’ve always been really confident and I’ve been taught not to think of myself as any different.’

The hardest thing has been losing friends. Two years ago Chelsie’s close pal and fellow CF sufferer Melissa (Missy) Dowling died at just 19.

The pair had grown up together although they hadn’t had spent much time in each other’s company since it emerged there was a risk of cross infection between CF patients.

‘We used to e-mail and text all the time so I was pretty depressed. I miss her so much,’ says Chelsie adding.’But I always say to myself that when it’s my time my friends will come to get me.’

Her grieving for Missy was the root cause of that difficult time at Legoland.

‘I have a wheelchair and we were using that. I kept telling him he was pushing it wrong. I was a nightmare,’ she says sheepishly.

But Glyn adds: ‘It was okay, I knew what was behind it. I did sometimes feel like letting go of the chair though,’ he adds as they laugh together.

Now Chelsie is looking into the possibility of a lung transplant and the couple are enjoying the fact she is doing well and is determined enough to give them some hope.

But they are facing the future head-on. ‘We know the end of the story but we try not to let it affect our lives,’ says Glyn.

Meanwhile Chelsie treasures some of Glyn’s words. ‘I always remember one thing he said to me – that he’d rather have me for a little bit than not at all.’

CYSTIC FIBROSIS

Cystic fibrosis (CF) is one of the most common life-threatening inherited diseases, affecting more than 9,000 people in the UK.

The condition is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body.

CF affects the internal organs by 
clogging them with thick, sticky mucus. This makes it hard to breathe and digest food.

Symptoms include a troublesome cough, repeated chest infections and poor weight gain.

Physiotherapy and medication are used to help control lung infections and prevent or slow the progress of lung damage.

Difficulty digesting food can result in malnutrition and medication and supplements are taken by patients.

Half the CF population will now live past 41 and improvements in treat-
ments mean a baby born today may live longer.

One of the main charities offering information, advice and support is the Cystic Fibrosis Trust.

As well as supporting patients and their families, it funds high quality research into the condition.

The success of lung transplantation is encouraging although an operation carries considerable risks and finding organ donations is a challenge.

Visit cftrust.org,uk for information about CF and organdonation.nhs.uk to find out about the Organ Donor Register.