Story
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Our daughter Elizabeth sufferers from cystic fibrosis. Cystic fibrosis, is a life limiting, life shortening, genetic condition which affects many organs, but many the lungs and digestive system. The lungs are blocked by sticky mucous, which causes many lung infections which leads to permanent lung damage. She has a intensive daily routine to help clear the mucous and try and prevent further damage. A total of two hours a day.
This involves a cocktail of 50 tablets, chest physiotherapy, inhaled antibiotics and also insulin to help control her cystic fibrosis related diabetes. She has many hospital appointments and is soon to go in for her fifth hospital admission in 19 months. Her lung function is declining rapidly.
Despite all of this she tries to live life to the full. She did very well in her GCSEs with only having an attendance of 65%. She hopes to go on to university and study law. She has campaigned to get a lifesaving drug for cystic fibrosis funded by the NHS. This drug called Orkambi has been licensed in the UK for 4 years and many have died in that time as sufferers still cannot get access.
Fortunately this drug is not patented in Argentina, so they are able to replicate it at a much lower price. Please help us raise these much needed drugs, to give our daughter a longer and better life.
Please give whatever you can it is deeply appreciated
Catherine