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Cystic Fibrosis Sticky PainfulA little boy can breathe a little more easily after he was donated a vibrating bed which shakes loose dangerously high levels of mucus from his lungs while he sleeps.

Jack Johnstone, six, suffers from a severe form of Cystic Fibrosis (CF), which has recently led him to be hospitalised once a month, as he battles life-threatening infections caused by a build up of the mucus on his chest.

Before the arrival of the bed, Jack’s parents Tina and Kevin, 33, from Preston, Lancashire, were told that their son’s chest had ‘significantly deteriorated’ due to the number of infections he had contracted.

Doctors told the couple that Jack’s quality of life and life expectancy had been reduced, but could not tell them by how much, simply that it had been a terminal effect.

His lung capacity only reached a maximum of 59 per cent, leaving him breathless and at risk of lethal infections.

But thanks to the donation of the £3,000 bed, Jack’s condition is better than ever.

In just one month of sleeping in the bed, his lung capacity has already increased by eight per cent.

It works by vibrating at different levels on different areas of Jack’s back to loosen the sticky fluid and cause him to cough it up, in turn saving his life.

jack-johnstoneMrs Johnstone, 38, said: ‘Jack has never coughed up any mucus in the whole of his life.
‘But since he has had the bed, he’s started clearing it from his chest. It’s amazing, it’s actually saving his life.’

The youngster is forced to spend two weeks in hospital every three months to provide him with life-saving treatment, and his condition is reviewed on each visit to hospital, with his medication altered to ensure he is able to have the best quality of life possible.

The little boy is a keen fundraiser for the Cystic Fibrosis trust and had been trying to raise enough money to buy the bed himself.

But, after hearing of his condition through his fundraising efforts, manufacturers Niagara donated one of their beds for free.

Mrs Johnstone, a care home manager, said: ‘We were trying to raise the money to buy one of the beds for Jack, so it was amazing when they said they wanted to give us one.

‘They were touched by Jack after seeing his story. It’s wonderful.’

The bed uses Cyclo-Therapy as a form of massage therapy to help people with breathing problems.

It uses a 3-way vibration that rotates and gently pulsates out from the centre in a whirlpool motion.

Manufacturers say for respiratory problems such as Cystic Fibrosis, these gentle vibrations help to mobilise any mucus, giving CF sufferers a better chance of expelling it from the lungs and helping with chest clearance.

Jack has created a number of videos where he talks about his treatment and how he is feeling, to help other children in his position.

As a keen fundraiser, he has already stumped up £4,000 with the help of his family to support the Cystic Fibrosis trust.

His mother said: ‘It’s so refreshing to see someone so young who is so poorly, wanting to help others.

‘We help him as much as we can, but it’s Jack who is the driving force behind raising money and awareness.

‘He just wants to help other children by telling them what he has been through and showing them how much they have to live for.

‘It’s been a difficult few years for us all.’

Jack has to eat a very high-fat diet to help regulate his condition, much to the envy of his younger sister, Isobelle, five.

Mr Johnstone, a care home branch manager, said: ‘We have to feed Jack chocolate bars and crisps as part of his condition – he actually eats fruit as a treat.

‘Unfortunately though Isobelle doesn’t really understand why she can’t have the same’

‘Isobelle idolises Jack and she doesn’t fully understand what is wrong with him so it’s hard when he goes into hospital for such a long time.

‘She’s very agitated when he’s not there.’

A spokesperson from Niagara Adjustamatic beds said: ‘We had the pleasure of meeting Jack and his family earlier this year, and after seeing how determined they are to improve his quality of life, we were keen to help and were delighted to be able to donate one of our Adjustamatic beds.

‘Jack and his family are an inspiration and we hope we can continue to help them raise awareness about Cystic Fibrosis.’

2013 Miles in 2013

I am doing my 2013 miles in 2013 challenge in aid of the Cystic Fibrosis Trust as I have been surprised since I started fundraising for the CF Trust just how many people are unaware of this disease and so I hope my efforts will not just raise money, but also awareness of the UK’s most most common life-threatening inherited disease.

The first person to commit to sponsoring my 2013 mile challenge has committed to 1p per mile (£20.13 in total) and this got me thinking. I am hoping that as many as possible of those reading this will commit to do the same and the best thing is, if each person does this on a “pay as you go” type approach all you will need to part with is approx £2 just after each pay day. In January I completed 205.9 miles and in February I completed a further 200.9 miles. If you can please spare £4.07 to help the Cystic Fibrosis Trust it will be greatly appreciated.

The easiest way to give your sponsorship is to visit my Just Giving page: http://www.justgiving.com/2012-AYearWithoutBeer-CF.

2013 Miles in 2013 – The rules

The rules for my 2013 miles in 2013 challenge are quite simple:

  1. All miles must be completely self powered (no motors, sails, etc)
  2. I must be able to evidence all miles, either via GPS or with a picture of any static gym equipment

To complete my 2013 miles I will be running, cycling, rowing and who knows, I might even try a few other self powered methods along the way.