‘Our emotions have been up and down’

24/5/2012 (SF) REAL LIFE''Andrea Hutchinson's three daughters have Cystic Fibrosis and her two sons are carriers. The family are raising awareness of the disease. ''Pictured is: (middle) Andrea Hutchinson (41) with her children (l-r) Emma Hutchinson (21), Abbie Hutchinson (12), Billy Hutchinson (17), Ellis Hutchinson (19) and (front) Harry Hutchinson (3).''Picture: Sarah Standing (121826-5953)
24/5/2012 (SF) REAL LIFE''Andrea Hutchinson's three daughters have Cystic Fibrosis and her two sons are carriers. The family are raising awareness of the disease. ''Pictured is: (middle) Andrea Hutchinson (41) with her children (l-r) Emma Hutchinson (21), Abbie Hutchinson (12), Billy Hutchinson (17), Ellis Hutchinson (19) and (front) Harry Hutchinson (3).''Picture: Sarah Standing (121826-5953)
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Coping with the life-changing news that one of your children has an incurable condition must be hard enough.

But to be told that all three of your daughters have it and your two sons are both carriers of the disease is a shock no parent could prepare themselves for.

Yet that’s the position Andrea and Paul Hutchinson found themselves in less than a year ago.

When youngest daughter Abbie, 12, was diagnosed with cystic fibrosis, doctors recommended that the rest of the family should get checked out.

The test results were to leave the couple in shock – and change life as the Hutchinsons knew it forever.

‘It’s been like a rollercoaster,’ says Andrea. ‘Our emotions have been up and down.’

Although they didn’t know it, both Paul and Andrea are carriers of the condition, which is caused by a faulty gene and affects the internal organs, particularly the lungs and digestive system.

If two carriers have a baby, there’s a one in four chance that the child will be born with CF.

Abbie and her older sisters Emma, 21, and 19-year-old Ellis have all now been diagnosed with the condition.

And brothers Billy, 17, and three-year-old Harry have both been found to be carriers themselves.

Andrea, 41, says: ‘The statistics say there’s a one in four chance of having it and a 50 per cent chance of being a carrier. We’ve blown those statistics out of the water.’

The family, from Copnor, were stunned when Abbie was diagnosed with CF in July 2011.

A history of asthma runs through their family and Abbie is a sufferer, but there was no reason to suspect the persistent health problems she’d been having pointed to something more serious.

But when Abbie took a turn for the worse at the beginning of 2011, they were worried.

‘She had been in and out of hospital and spent three or four days there over new year with pneumonia,’ explains Andrea.

‘She never got better and we kept going back to the doctors with chest infections and then she got taken really bad.

‘They did a chest X-ray and something showed up. She’s asthmatic anyway but they decided to do some blood tests and said “I think we’ll do a sweat test, it’s highly unlikely but we’ll rule it out anyway” and that’s when they realised it was cystic fibrosis.’

She adds: ‘I’d heard of it but not realised exactly what it entails. My first thought was “Oh my God, that’s when they have to take lots of medication and you have to pat them on the back”.’

‘I never thought she’d have something as serious as that.’

Cystic fibrosis is one of the UK’s most common inherited diseases and symptoms are usually spotted in early childhood. Babies are routinely screened for the condition with a simple heel prick test after birth, yet Andrea and Paul don’t know why their children weren’t diagnosed earlier.

There is no cure for cystic fibrosis so the aim of treatment is to ease the symptoms and make the condition easier to manage.

For the Hutchinsons, Abbie’s diagnosis was to alter everything.

‘That’s when everything just changed,’ says Andrea. ‘They sent us home and me and Abbie were both crying a bit and sat in silence on the way home. We parked the car and just said “Oh my God”.

‘There’s a specialist nurse who’d said “Don’t look it up on the internet, just go home, try and take in the information and I’ll come round and go through everything with you”.

‘He was here for about three hours, going through what it entails and the treatment that can be involved.

‘They talked about getting everyone else tested more or less straight away. I didn’t in my wildest dreams imagine it would be the rest of them. Hindsight is a wonderful thing, it all started to fit into place.’

Emma had suffered from a persistent cough and Ellis had also had problems with asthma.

For Emma, the diagnosis that she had CF came only two weeks before she gave birth to her son James, now seven months.

‘I’ve never been as bad as Abbie,’ adds Emma, from Buckland. ‘I didn’t believe it. A doctor phoned me and explained how CF works and how we got it. Mum and dad have got to be carriers for it to be in me.’

Despite the impact CF has on life expectancy, Emma’s determined not to worry about the future.

‘We have to go every three months for a check-up and then once a year they give us the big MOT,’ she adds.

Everyone’s taken the news differently, according to Andrea. While Ellis also tries to get on with her life it’s been particularly hard for Abbie.

Once Emma and Abbie had been diagnosed, it wasn’t long before the others were also tested and had to face up to the results.

‘After Emma and Abbie both got diagnosed I wanted them all to be tested for peace of mind,’ says Andrea.

‘They said “Once you know, there’s no going back”. I had to make the decision to test Harry and Billy and Ellis made their own decisions.’

As carriers, Billy and Harry don’t have CF. But if they have children with another CF carrier there’s a chance the baby could go on to inherit the condition.

If the tests hadn’t been carried out, it’s likely that they would still be living in the dark – and that brings some mixed emotions.

Andrea explains: ‘We could probably still never know. You can have the gene and carry it without ever knowing.

‘Sometimes I’m pleased we found out and sometimes I’m angry.

‘It’s changed simple things. If Abbie’s not well I can’t just take her to the doctors. There are things with CF that you have to do day-to-day.

‘Hopefully when they get the medication right, there’s no reason why she can’t lead quite a normal life. But physio is always going to be part of her life.

‘Most people know from when their children are little.

‘They don’t spend 21 years thinking everything is okay. You can’t help thinking about the “what ifs”. They’ve all been in so many situations that they’re now told they shouldn’t be.’

While Abbie is on the most medication and gets treated by the team at Portsmouth’s Queen Alexandra Hospital, the rest go to Southampton.

Abbie’s daily routine involves treatment with a nebuliser, physio exercises and medication before she can go to school and when she gets home again.

Andrea says there’s a lack of awareness about CF – particularly the fact that sufferers aren’t entitled to free prescriptions despite their heavy reliance on medication.

As the family approaches the end of the first year living under the cloud of CF, there’s still a lot to get their heads round.

‘We have to deal with it,’ adds Andrea. ‘I’m being strong with them. You do think of the worst-case scenarios. They’ve told us what can happen, not what will happen, they’ve talked about it being life-limiting and life expectancy.

‘For all of them to have it, I can’t believe it.’

RAISING AWARENESS

Raising awareness about Cystic Fibrosis was so important to the Hutchinson family that they got behind the recent CF Week.

Ellis organised a fundraising day at her work and collected almost £800 for the Cystic Fibrosis Trust.

The 19-year-old organised the day at Affinion International, in Portsmouth, and the day included a penalty shoot out, cake sale, raffle and sweet selling.

Meanwhile her friend and colleague, Reah Goddard, raised £200 by holding an all-day sponsored silence.