Daughter's cystic fibrosis diagnosis prompts dad to walk 100km

Published: 18 Feb 2013 09:301 comment

A DAD whose infant daughter was diagnosed with cystic fibrosis is to walk 100km in 15 hours to raise money for the charity which could help her. James Legg's daughter was diagnosed with the inherited, life-threatening condition at just six weeks old after a standard newborn baby test flagged that little Chloe was a sufferer.

James, with daughters, Emily and Chloe (L to R) and wife Carla

James, who works as an assistant plant hire manager at Shorts Group Ltd, Lyndhurst Road, Ascot

and his colleague Jason Southam, 40, will be treading the equivalent in distance of two and a third marathons, at just over 62 miles, in a bid to raise £5,000 for the Cystic Fibrosis Trust.

The dynamic duo will have to walk 6.6km or 4.1 miles an hour, to get to from London to Brighton on time.

James, 33 and wife Carla, 32, an IT test manager, discovered their youngest daughter's condition just two weeks ago, leaving them shocked but resolved to do everything in their power to help the infant.

"It's a massive blow when you read all the statistics about it," said James. "It's devastating, but for the sake of our two-year-old daughter, Emily, we've got to get on with it and do the best we can.

"It's not something you ever think about until it happens to you. Hopefully our story might prompt people to check if they carry the CF gene."

Cystic Fibrosis is one of the UK's most common life-threatening, inherited diseases, which affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.

Half of people with CF will live past 41 years of age but developments in science are extending lifespans all the time.

James and Carla have a rigorous daily physiotherapy routine to go through with little Chloe, to ensure her lungs remain clear. She also has to be fed enzymes, which help break down the food in her digestive system.

And so a rigorous training plan has been constructed to smash the £5,000 target, to raise as much as possible to help research into a cure.

James added: "It's only been a week since I decided to do this walk and we've raised more than £1,000 already.

"We haven't got long to train. We've been supplied with a training schedule, so we are going to try and stick to that as much as possible. We'll try and motivate each other."

To donate to the London 2 Brighton Challenge visit www.justgiving.com/shorts-group

NEWBORN BABY TESTS:

Chloe's condition was first discovered as the result of a heel prick test carried out on all newborns. A tiny amount of blood was taken from Chloe's heel and tested for cystic fibrosis, sickle cell disease and three other conditions. It revealed a borderline likelihood of cystic fibrosis, which on further testing, proved positive.

WHAT IS CYSTIC FIBROSIS?:

Cystic fibrosis is a rare condition that affects how the lungs work and makes it difficult for the body to digest food. It affects only one in 2,400 babies born in the UK.

A baby inherits cystic fibrosis through a faulty gene, that controls the way salt is absorbed by the body.

Too much salt and not enough water is allowed to pass into the body's cells. This turns the secretions, which normally lubricate our organs, into a thick, sticky mucus. This mucus blocks the airways in the lungs and clogs the digestive system.

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  • sammyd1
    1 post
    Feb 18, 18:23
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    this is amazing what you are doing and i want to send a special thank you from myself and my son brandon who is now 10 months and has cystic fibrosis. we are originaly from ascot but now in lincolnshire. im sure u are already a memeber but if not join the cf trust forum people will raise.money for u on there also u can get loads of advice and use it as some were to voice ur stress and worry like i often do. good luck with the walk xx

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