Evie's page

Ian Pritchard is raising money for Cystic Fibrosis Trust

Participants: Sara Pritchard, Amy Burns-Mace, Chris Pritchard

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Cystic Fibrosis Trust - Hadrian's Wall Challenge - Ladies Only · 11 June 2010 ·

Cystic Fibrosis Trust Verified by JustGiving
RCN 1079049 (England and Wales) & SC040196 (Scotland)
Cystic fibrosis (CF) is a life-shortening genetic condition that slowly destroys the lungs and digestive system. The Cystic Fibrosis Trust is the only UK-wide charity fighting for a life unlimited, when everyone living with CF can look forward to a long, healthy life. www.cysticfibrosis.org.uk

Story

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Cystic Fibrosis is the UK's most common life threatening inherited disease.

Cystic Fibrosis affects the internal organs, especially the lungs and digestive system by clogging them with sticky mucus.  This makes it hard to breathe and digest food.

Each week, five babies are born with Cystic Fibrosis, each week three young lives are lost to Cystic Fibrosis.

Average life expectancy is around 31 years.

On 6th August 2007, Evie was born and we were over the moon.  Just 3 weeks later our world was crushed when Evie was diagnosed with Cystic Fibrosis.  Evie is now 2 years 8 months and she had endured a roller coaster ride in and out of hospital having intravenous antibiotics to fight infections, daily preventative drugs, steroids, enzyme replacements for her pancreas as it does not function at all, she had had to have tonsils removed to prevent infection and a permanent port inserted under the skin for her IVS which she is currently having to have on a 3 monthly basis. This consists of 18 syringes of medication daily ! Despite this she is truly inspirational she is always smiling even when both Ian and myself are full of despair and anxiety.  It is very hard watching your child having to battle daily to stay relatively well, something I'm sure you will agree, we all take for granted.

The strain of CF Evie carries only affects 0.009% of the population and though her strain is mild it has no bearing on how that person will be health wise, a mild form can sometimes affect the person worse than a severe strain.

We felt as parents that we had to do something positive for our child and all those others suffering from this disease and so we have become actively involved in raising money for the CF Trust in  the hope that one day thanks to gene replacement therapy a cure will be found and it will be permanently eradicated.

Last year we walked the Yorkshire 3 peaks and raised £2,200, this year we are taking on the challenge of Hadrian's Wall to raise money for this well worthy charity, please help us to raise the same again.

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