Story
Charlie York, aged 12, was born with Cystic Fibrosis (CF). This is a chronic life shortening disease that affects 10,000 children and young adults in the UK alone. It affects the lungs and digestive system. Current life expectancy is in the 30's and there is no cure.
Some of you may know that Charlie has battled with Cystic Fibrosis all of his life. By the summer of 2014 he had became terribly ill with a serious lung disease and was placed on the organ transplant list under the care of Great Ormond Street Hospital. Miraculously he received the offer of a new pair of lungs soon afterwards and underwent a transplant on 31st July 2014. We have just celebrated Charlie's second year anniversary post transplant. Despite the continuing medical regime of anti rejection drugs, antibiotics, minerals and vitamins, Charlie is on the greatest form of his life. He has just completed a Sub Aqua course, won a 100m race at school sports day and is currently trying to master a skim board on his beach holiday. Life for Charlie ( and his family) has never been better. We realise how lucky Charlie has been to have been offered a new life.
However, as we know from experience, life can be significantly more challenging, stressful and tough for those families with sick CF children. Charlie spent many years as an in patient undergoing IV antibiotic treatments for his damaged lungs. Despite the excellent care of NHS professionals these hospital stays are tough both on the young patients but also the wider family.
Cystic Fibrosis Care has been established by families with a close affinity to CF. We aim to provide CF sufferers and their families with essential equipment to make their time in (and out) of hospital more bearable. This might mean funding new gym equipment for the CF ward's specialist physiotherapists; buying portable nebulisers so that treatment of young patients can happen at their homes rather than in hospital, thus reducing travel time and the stress that in patient care can bring. We are also looking at a hardship support element to help those families who find prolonged hospital stays with their children to be financially challenging - this might involve hotel provision, respite care or even holiday breaks.
Graham Senior and I intend to cycle just under 1000 miles in 9 days from Land's End to John O'Groats from 10-18th September to raise money for CF Care. We will be sleeping in tents on the way - except where we can blag a bed from friends. Any donation that you could give us would be gratefully received.