Sarah Maltby MHK
Sarah's End to End Walk page
Fundraising for Cystic Fibrosis Trust IOM
Story
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Recently my friends baby girl Edie was diagnosed with Cystic Fibrosis at 2 weeks old. She is the first baby in 8 years to be diagnosed on the Isle of Man. Her parents, Joe and Nadine have been friends of mine for a number of years and I felt, especially after having a difficult pregnancy with Stan, that I could empathise with the family and really want to help increase awareness and raise money to help people who have this condition.
Cystic Fibrosis is a life-shortening genetic condition that causes internal organs, especially the lungs & pancreas, to become clogged with thick sticky mucus, resulting in digestive problems, chronic lung infections and inflammation of the lungs. It is a progressive condition, which means it tends to get worse over time and eventually the lungs can become increasingly damaged and the condition can be fatal.
There's currently no cure for cystic fibrosis, but there are certain treatments to help control the symptoms, prevent complications, and make the condition easier to live with.
The Cystic Fibrosis Trust (IOM) helps and supports all CF patients on the Island (13 people), by purchasing medical equipment that the NHS can't supply (which is becoming more so since the crisis in the NHS). Purchasing items that will help them keep fit until a permanent cure can be found - portable nebulisers (which take less than half the time to use than a NHS supplied one), portable oxygen concentrators, wii fits, fit bits, trampolines, gym memberships etc, which to you and I may be nothing, but to them it's help with important physio which is needed to clear their lungs and keep the lungs as healthy as possible. The Trust also helps to buy pre-payment prescription certificates as Cystic Fibrosis patients have to pay for their own prescription charges once they have left school and have a job. Most Cystic Fibrosis patients will take between 30-50 tablets daily along with nebulised medication also, so without the certificates the cost of prescriptions would be huge.
Money is also sent to the Cystic Fibrosis Trust (UK) for research - they are constantly working to make this a fully live-able disease, and possibly even finding a cure.
Recently my friends baby girl Edie was diagnosed with Cystic Fibrosis at 2 weeks old. She is the first baby in 8 years to be diagnosed on the Isle of Man. Her parents, Joe and Nadine have been friends of mine for a number of years and I felt, especially after having a difficult pregnancy with Stan, that I could empathise with the family and really want to help increase awareness and raise money to help people who have this condition.
Cystic Fibrosis is a life-shortening genetic condition that causes internal organs, especially the lungs & pancreas, to become clogged with thick sticky mucus, resulting in digestive problems, chronic lung infections and inflammation of the lungs. It is a progressive condition, which means it tends to get worse over time and eventually the lungs can become increasingly damaged and the condition can be fatal.
There's currently no cure for cystic fibrosis, but there are certain treatments to help control the symptoms, prevent complications, and make the condition easier to live with.
The Cystic Fibrosis Trust (IOM) helps and supports all CF patients on the Island (13 people), by purchasing medical equipment that the NHS can't supply (which is becoming more so since the crisis in the NHS). Purchasing items that will help them keep fit until a permanent cure can be found - portable nebulisers (which take less than half the time to use than a NHS supplied one), portable oxygen concentrators, wii fits, fit bits, trampolines, gym memberships etc, which to you and I may be nothing, but to them it's help with important physio which is needed to clear their lungs and keep the lungs as healthy as possible. The Trust also helps to buy pre-payment prescription certificates as Cystic Fibrosis patients have to pay for their own prescription charges once they have left school and have a job. Most Cystic Fibrosis patients will take between 30-50 tablets daily along with nebulised medication also, so without the certificates the cost of prescriptions would be huge.
Money is also sent to the Cystic Fibrosis Trust (UK) for research - they are constantly working to make this a fully live-able disease, and possibly even finding a cure.