TOUR NEWS: Episode 6: The Team Rynkeby School Run provides hope for children like Conrad

– He’s a child like any other – and as long as he receives
preventive treatment – he’ll be fine. Conrad looks like any other healthy
one-and-a-half-year old child. But behind the big eyes and blond curls – he is suffering from the incurable – and serious lung disease,
cystic fibrosis. – Of course it’s a hideous disease – and it’s hugely unfair on him. About 200 children in Denmark have
cystic fibrosis It’s a chronic disease that affects
several of the body’s organs – digestion – and the lungs in particular – are subject to severe infections – and subsequent damage. – We are constantly on the lookout to check
whether he’s coughing – or whether his nose is running – and whether the mucus is sitting
on his lungs. – So it’s we think about
all the time. – Almost every day we discuss
whether he’s been coughing during the day. The disease requires a huge amount of treatment
at home every single day. – Various masks – loads of pills – salt supplements – digestive enzymes – and special vitamins. It also means – that Jon and Julie constantly
have to be aware of – what their little boy touches – and what he gets up to. – It’s something that’s at the back
of their heads all the time. – We think even more about it, for example,
when we’re out shopping – what’s he touching? – And we have to remember to wash our hands with
spirit after touching his pushchair. – Then there’s a child over there
coughing – and a man with a runny nose. – It means we pay much more attention to
whether other people are ill. – Instinctively, we probably keep
a bit more distance when we’re out. In May 2016 Denmark introduced – screening of newborn children
for cystic fibrosis. That is how Julie and Jon found out – that their little, newborn son was
seriously ill – when he was just 10 days old. – At the time it was horrendous. – It was the worst thing
we have ever gone through. – First we thought
it must be a mistake. – It simply couldn’t be right
that something was wrong with him. – You can’t tell by looking at him
that something’s wrong. – There was a perfect little baby
lying there – and then they suddenly called and told us
he was ill. – We had some awful days – having to call our parents and tell them – that their wonderful little grandson
had this disease… – and we had no idea what it meant. – How profound it would be – and how long he would live. – We had so many questions
spinning round in our heads. A few days after the call, Conrad was
in Rigshospitalet for the first time – but it wasn’t the last. Each and every month he travels
with his mum or dad – for a checkup at the Cystic Fibrosis Centre – at the Danish Children’s Lung Centre
in Copenhagen. Here, the doctors and specialists
keep a close eye on him. They check his health – they measure and weigh him – check for bacteria in his lungs – and, every three months,
they check his lung function too. Since 2017, the Team Rynkeby Foundation
in Denmark via the Team Rynkeby School Run – has been supporting the Children’s Lung Foundation,
to the tune of just over € 2.4 million. Part of the money goes towards research – an area that is sorely in need of it. Before Danish schoolchildren started
raising money, – there was very little – almost non-existent funding – for this crucial research – which helps children with lung disease. – Without – this grant from the Foundation,
we would have been like a developing country – in terms of monitoring – in other words, following and assessing these children’s
real state of health. € 240,000 of last year’s funds
went to Kim G. Nielsen – for a project aimed at coming up with new – and better options for early
treatment of the children – who, like Conrad, get diagnosed
with cystic fibrosis during infancy. – The purpose of the cystic fibrosis project is to enable us to measure lung function – from the very moment
we diagnose the children. – That means we can reassure the parents – and ourselves – that we can see that the disease
is not evolving in a dangerous direction. – Raising money
helps give us hope – that he can be fit and healthy in the future. – That someone is trying hard
to improve the situation. There’s hope. Kim Nielsen sees the combination of the new financial
opportunities provided by Team Rynkeby – and the children running and new medicine – as a positive thing for the future. – When you look at Conrad – what do you think? – I think we’re in a new era. – I’m so… – happy… – to witness a situation – in which a child can thrive so well, even with this
extremely serious disease – and I’m extremely hopeful that things will
go well for a very, very long time. – I hope that Conrad gets to lead a totally normal life – like any other young child – or young person – or adult. And that cystic fibrosis will consume as
little of his life as possible.

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