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Mum discovered her daughter had cystic fibrosis five years after test was clear

‘She’d usually put weight back on again too, so we were reassured that it was just her size fluctuating as she grew.

‘Plus, they’d already done the heel prick test, so in fairness, they weren’t even thinking about CF.’

Armed with new information, Jo returned to the doctor with Imogen who, just like her little brother, was then referred to the Royal Brompton.

Sadly, her parents watched history repeating itself, as a sweat test confirmed she had CF a week before she was due to start school.

‘Nobody knows why that happened,’ explained Jo, whose husband Neil is a sign engineer. ‘I’m not angry with the doctors though. After all, CF is such a niche area of medicine. Plus, these people are saving my children’s lives.

‘You never think things like this will happen to you. I still remember every single detail of that day – what I was wearing, where I was when I found out.

‘We went into survival mode. As a family, we aren’t panickers, but I went into overdrive, phoning the school she was due to start, trying to organise everything for her and let her teachers know.

‘Imogen herself was amazing. When Zachary had been diagnosed, we’d shown her a video to help explain it. We then said to her, “You have CF too.” And she just said, “Okay.” That’s what I love about kids – they take everything in their stride.’

Having two children with the condition has not been easy for the family.

Due to the risk of cross-infection, cystic fibrosis (CF) sufferers are usually advised to keep apart – but, being brother and sister, that is simply not possible for Imogen and Zachary.

Instead, their parents Jo and Neil, both 36, of Worthing, West Sussex, must ensure each piece of equipment, from inhalers to nebulisers, is kept separate and meticulously disinfected after every use.

Despite facing daily difficulties, the children are ‘amazing,’ according to Jo and share an unbreakable bond with each other and their brother Archie, seven, who does not have the condition.

She said: ‘It would be impossible to keep Imogen and Zachary apart, so we manage as best we can.

‘The risk of cross-infection is always in our minds but, generally, they are both doing really well. They amaze us every single day.

‘Imogen is great with Zachary, encouraging him to do his treatment and stay healthy, but they are equally close to Archie. It’s made them all so strong and we are very happy to have them.’

Despite their unflinching bravery, life with CF for Imogen and Zachary, who both take medication and have regular physiotherapy, is not without its challenges – particularly because the risk of cross-infection is so high.

According to the charity Cystic Fibrosis Trust, people with CF are vulnerable to different types of bacteria that grow in their lungs.

Usually harmless to people without the condition, they can be easily transmitted from one CF patient to another through meeting, sharing rooms, cutlery, or medical equipment, or by kissing – and the risk heightens the longer they are in close proximity.

Because of this, it is normally recommended that someone with CF does not come in to close proximity with another patient.

Being brother and sister, though, that is not possible for Zachary and Imogen who, after years of avoiding cross-infection, have just both been struck down by a bug for the first time.

Jo said: ‘We managed years without cross-infection, which shows we were doing something right, so it was gutting for them to both fall ill.

‘We manage as best we can, keeping all of their equipment completely separate and sterilising it after every use. We label absolutely everything and also make sure they do their physio separately, so they aren’t coughing all over each other.

‘In the past, when one has caught a bug, it’s been agreed that the safest course of action is just to put them both on a course of antibiotics.

‘That’s about as far as we can take it.’

While the pair are poorly at the moment, they normally maintain an overall good lung function and stay active, with Imogen even competing in trampolining at a national level.

Jo is sharing her story in support of the Cystic Fibrosis Trust’s #LifeSavingDrugsNow campaign.

It aims to make life-changing medicines available on the NHS, including Orkambi, a drug shown to slow the decline of lung function, thus extending patients’ lives, which is currently the subject of a price dispute with manufacturers Vertex Pharmaceuticals.

Earlier this month, the Health and Social Care Committee held a public hearing – the first of its kind – on the availability and pricing of Orkambi and other CF drugs, with Vertex, NHS England and NICE all involved.

Jo, who has praised her remarkable family and called for more funding for research to find a cure for the condition, said: ‘The future is brighter for CF patients than it used to be, but more still needs to be done. Orkambi won’t help my children in particular, but I truly hope it becomes available for those in the community that need it.

‘I’ll never stop fighting for awareness, funding, research – and ultimately, a cure.’

Dr Keith Brownlee, our Director of Policy, Programmes and Support, said: ‘Parents with two or more children with cystic fibrosis have the added anxiety that if one child picks up an infection there is a risk that the other child, or children, will also get an infection.

‘Having two children with cystic fibrosis is at least than double the care, anxiety and emotional stress.’

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