Thanks for taking the time to visit my JustGiving page.
My daughter Courtney, now 19, is the oldest of 6 Guernsey children (and 12 Jersey children) that have Cystic Fibrosis and the first to reach adult care. This care is now primarily controlled by the lovely team on the CF Unit at Southampton General Hospital. CF is a chronic condition, they do not get better. Lung function is the most serious of the many problems that effect them. Ultimately heart/lung transplants are required if life is to be extended. As things stand 50% of those with CF die before their 30th birthday.
In the UK the CF Trust with the help of many many volunteers and numerous events does a great job of increasing awareness of CF and raising money for research and drugs trials. In contrast, awareness of and support for those with CF in Guernsey and Jersey is poor to non existent, I am going to change that. With the help of another father whose daughter daughter also suffers from CF, I have set up 'Cystic Fibrosis Guernsey' to give local families the voice and support they have been missing. We also have a FaceBook page, Cystic Fibrosis Channel Islands.
The challenge I will be taking part in to raise money is the Gobi March, located in NW China, from June 19-25th 2016. This is an event very similar to the better known Marathon des Sables. The Gobi March is a 250km, self supported, 7 day, 6 stage ultra event that starts at an altitude of 7000ft, climbs over a few days to 9000ft before descending into the Gobi Desert proper. As a man of 51 who only did his first marathon last year this should be quite a challenge!! The 4deserts.com web site has more information.
After years of gratefully benefitting from the 'health system' it's time to give something back. The idea of running a marathon or double marathon (penultimate day) every day for only a week and the physical and mental battle I will face to make it to the end of each stage parallels the battle these children face every day of their lives to keep their lungs healthy. I want to make every breath I take on this journey count for them.
Much training will need to be done before I can hope to complete this extreme challenge. My fund raising efforts began at the Guernsey Water Front Marathon on 30th August, my first ever marathon. I will up date you all as my training progresses towards the Gobi March ultra event in June 2016.
Thank you, Mike
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