CYSTIC FIBROSIS TRUST
	Our grandson Joseph was born 5 weeks premature, with his bowel leaking into his stomach, causing his stomach to swell at an alarming rate.  He was quickly transferred from Harlow Hospital to Kings College hospital in London where, at one day old, he was operated on to repair the bowel and drains were put into his stomach and just for good measure the surgeon removed his appendix.  So, what is normally a happy exciting time for new parents, for our son and daughter-in-law turned into a nightmare of anxiety about their new son, and trying to spare some time for their healthy 2 year old.  Joseph was in intensive care for 3 days and in hospital for over 3 weeks.  We all breathed a sigh of relief when he was allowed home, but then came the bombshell, doctors suggested he be tested for Cystic Fibrosis - which proved positive and Helen (my daughter-in-law) began a regime of doctor and hospital appointments, learning physio and trips to the dietician.

Joey has to have enzymes before any food, antibiotics every day, extra vitamins and physio twice a day.  He has been in hospital on two other occasions when he has needed extra care because of chest infections.  Joey was lucky - he was diagnosed early, some children are not diagnosed until their lungs are already damaged.  I was fortunate - I have three healthy grown-up children - and yet as it turned out my son is a carrier of the defective C.F. gene and so is his wife, which means any children of theirs - have a one in four chance of having Cystic Fibrosis, a two in four chance of being a carrier of the defective gene, and a one in four chance of being completely C.F. free.  Joey was unlucky, his older brother was lucky to be healthy.

	One in every 25 people carry the defective C.F. gene, usually without knowing it, and there are 7,500 babies and young people with C.F., the most common life-threatening inherited disease in the U.K.  C.F affects vital organs in the body, especially the lungs and pancreas, by clogging them with thick, sticky mucus.  Serious symptoms and complications include infection, inflammation, malnutrition, diabetes, liver failure and osteoporosis. The Cystic Fibrosis Trust was formed in 1964, when most children with C.F did not live beyond the age of 10.  Now with improved treatment life expectancy is around 30, still less than half the age we can expect to live to. In 1989 the faulty gene was identified and now the hope for a cure comes ever closer.  Doctors and scientists are working on ways of safely correcting or replacing the faulty gene.  The Cystic Fibrosis Trust currently spends £4.5 million each year on medical research, clinical support and family care.  It has also established paediatric and adult centres around the country. Joey is now a lovely, energetic, noisy two and a half year old - he’s inclined to be pale and underweight, but mostly no one would know he is a sick child.  We, as a family, in the last two and a half years, have raised over £12,000 for C.F.T. with events such as concerts, sponsored cycling and quiz evenings and have been amazed at the support and generosity of the people who have attended.  I have been doing line dancing at the Village Hall, and hope to start again in September.  We are also planning an open air concert in Chigwell on 30th June 2002. Gwen Noble