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Cystic Fibrosis Crying Out For A CureSam was 13 when the transplant call came. Since the operation, Sam has been able to do things he had never dreamed of. He can spend more time with his friends, go bike riding with them, and take part in drama, both in school and in theatre productions.

“I can’t believe it was only a year since I had my double lung transplant. It hasn’t been the easiest of years, but I wouldn’t change anything now.”

-Sam, who spent five years on the transplant waiting list.

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What Sam and his family didn’t realise is that transplant is only a treatment, not a cure. Sam has suffered a number of complications since the operation, including post-transplant lymphoproliferative disorder (PTLD), which meant he contracted conditions from the donor lungs, like glandular fever.

With the support of their friends, family and the Cystic Fibrosis Trust, Sam and his family have made it through some tough times. Just a year ago Sam was fighting for his life, and today he is looking forward to starting his GCSE options in September. Sam has also been able to find other people like him, which has helped his recovery enormously.

It is vital that everyone who is suitable for a lung transplant receives one: currently one in three people with cystic fibrosis on the transplant waiting list dies before they can receive a donor lung; we need to improve this statistic.

Cystic Fibrosis A Race We Must Win2013 Miles in 2013

This year I am trying to complete 2013 miles self-powered miles. It is has been 10 years since my cousin’s son Adam lost his fight with Cystic Fibrosis. Adam was just 18 years old when when he lost his lifelong battle with CF, the UK’s most common life-threatening inherited disease. Despite spending large parts of his short life in hospital Adam never once complained, not even of a headache and was determined to make the most of everyday.

My 2013 miles in 2013 challenge is 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, in February I completed a further 200.9 miles, in March I completed 185.7 miles, in April I completed 192.1 miles and in May I completed 168 miles. If you can please spare £9.53 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.