At least two children a day in the UK are diagnosed with a liver disease. SARAH FOSTER talks to one mum about her son’s condition and how they’ve been raising awareness.
Dressed in eye-catching yellow and having fun, Matthew Pragnell looks like he’s having a great time with his friends at the play centre.
Look a bit closer and you’ll see many of his young friends are wearing yellow too – and that’s because Matthew was guest of honour at a very special fundraising day recently.
In the days leading up to Big Yellow Friday it wasn’t guaranteed that he’d be able to make it. Struck down with a virus that hit him harder because of the liver disease he was diagnosed with as a baby, Matthew had to go into hospital.
It’s a familiar occurrence for his mum Zoe Pragnell and the rest of their family, who’ve had to get used to Matthew being poorly.
But with what seems like characteristic determination, Zoe was confident Matthew would be well enough to bounce back and take his place for the event raising money for the Childhood Liver Disease Foundation (CLDF) last Friday.
And sure enough he was able to join in with the sponsored slide and other activities at Moby’s in Fareham.
The CLDF is a charity that means a lot to the Pragnell family. When Matthew, now 14 months, was first diagnosed with a serious genetic liver disease it was a bewildering time for them all.
Their lives quickly became a blur of hospital stays and doctors appointments but the CLDF was on hand to make things that little bit easier for them.
‘They are really good,’ explains Zoe.
‘They are a real lifeline for families and we just want people to be aware of them.’
Matthew’s problems came to light within the first two weeks of his life when he was admitted to the Queen Alexandra Hospital, in Cosham, with what doctors thought might be bronchitis.
‘I didn’t know anything about liver problems but when he was born he was very small and I knew that something wasn’t right,’ says Zoe, from Fareham.
But although it had been his chest doctors were concerned about when he was admitted, something much more serious was soon troubling them.
One particularly observant doctor had noticed that the colour of Matthew’s stool in his nappy was unusual and took it away to be tested.
Zoe and husband Michael had not thought there was anything particularly unusual about their son’s pale-coloured stools. They’d got three other children – all healthy – and knew absolutely nothing about liver disease.
So when the doctor came back and said they thought Matthew’s liver was failing it was a complete shock.
‘We had no idea that the look of your stools meant anything,’ adds Zoe.
‘We just had to focus and the hospital had to contact King’s College Hospital in London but it was a really awful winter and we had to stay at QA so they could care for him before we could go to King’s College in the new year.’
Matthew spent 10 days at King’s College Hospital – a world leader in liver conditions – while the family anxiously waited for more news.
Tests revealed Matthew had a condition called Alpha 1-antitrypsin deficiency, a genetic disorder which means he’s lacking a vital protein needed to make the liver work properly.
The couple and their three other children Joe, three, Hannah, nine and Jemima, six, all had to be tested and were all found to be carriers. In families where both parents are carriers of the gene there’s a one in four risk of a child having the condition.
‘We’d never even heard of it but he was our fourth child and so statistically it was unlucky for him,’ says Zoe, 37.
‘It was really awful. At Christmas 2009 we initially didn’t think he was going to make it, he was so frail and really struggling but he’s done really well, although we are still under a consultant at QA.
‘The outlook really is that he could go for years without having too many problems or he could go into full liver failure in months.
‘It’s like a timebomb, we don’t know what’s going to happen.
‘People say “So he’ll need a transplant?”
‘But that is still a massive thing. I can remember thinking about what an awful dilemma that would be. I couldn’t morally pray for someone else to lose their life so that my child could have a liver but apparently it doesn’t work like that any more. They would be able to take a slice of a living person’s liver and transplant that into Matthew but there will be time to do all these things.’
It’s been a difficult, worrying, start to Matthew’s life but Zoe says her boy is remarkably cheerful and good-natured. He’s more affected by bugs other children would probably be able to shake off but Zoe says they are always looking to the future.
‘It is like a dream, it has been hard,’ she says.
‘Every day I look at him to see if his eyes are any yellower than they were the day before but if I think too much about it I’d be a wreck. He’s a very happy little boy.’
Although childhood liver disease is more common than leukaemia in the UK, many people are unaware of how it affects families like the Pragnells.
The CLDF aims to change that by putting money into research and raising awareness of liver disease.
And Zoe says the help they’ve been given was invaluable. When the chance came up for Matthew to take part in the sponsored slide at Moby’s, just off Newgate Lane, it was an opportunity not to be missed because the family are so grateful for the help they’ve been given.
‘The doctors have all been fantastic and they explain all these things but to keep up with it has been hard,’ explains Zoe.
‘The Children’s Liver Disease Foundation explained everything in layman’s terms and they have phone numbers for people to call.
‘We also got a visit from one of the foundation workers and she was able to talk to us about every day things. We get regular phone calls with updates from them.
‘When we’ve got any questions or we’re worried about anything they are there.’
More than 150 events took place up and down the country for the CLDF’s Big Yellow Day – including a wear something yellow day at the Kiddi Caru nursery in Whiteley.
Moby’s got involved by organising the sponsored slide a cake sale and other games.
Manager Sharon Philips says the children managed to raise around £200 and adds: ‘It was more about raising awareness than anything.
‘What happened to Matthew was a real shock. It was really was touch and go for the first year but Zoe never dwells on it and we really wanted to do something to celebrate.’
CLDF Chief Executive Catherine Arkley says many people don’t realise how common childhood liver disease is.
‘CLDF supports vital research into all aspects of liver disease as well as providing a tailored support service for young people with liver disease and their families, helping them to pick up the pieces once they’ve received this life-changing diagnosis,’ she says.
‘Over 75 per cent of our income comes from the fundraising efforts of individuals and groups all around the UK and Big Yellow Friday is a really important fundraising day for us.’
n For full details on CLDF visit childliverdisease.org