Thanks for taking the time to visit my JustGiving page.
Firstly, I am not a runner and this is a real challenge for me in my 44th year! I decided that by doing the Amsterdam run I would draw more attention than if I had run locally. I am doing this half marathon to help fund research into improvements in medication and ultimately a cure for Cystinosis. All monies raised will go to the Cystinosis Foundation UK of which I am a trustee. My 9 year old daughter was diagnosed with Cystinosis at 10 months old.
What is Cystinosis? Cystinosis is a rare disease that primarily affects children. It is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine.
Cystinosis Symptoms: Cystinosis also causes complications in other organs of the body. The complications include muscle wasting, difficulty swallowing, diabetes, and hypothyroidism. It is estimated that at least 2,000 individuals worldwide have Cystinosis, though exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed.
Medication: Children with Cystinosis have to take a massive amount of medication around the clock. Each month Darcy takes delivery of bottles of medicine, tablets, capsules, drops & eye-drops weighing over 12KG in total! She has to have eye-drops every 2 hours minimum during the day to dissolve crystals in her eyes. She has Cystagon capsules every 6 hours around the clock. As well as this she takes a plethora of oral medicines such as sodium bicarbonates & potassium chloride and various other tablets. Many children suffer from severe vomiting due to the intensity of the medication they need to survive.
With around just 150 patients in the UK most of the fund raising is done by family and friends of patients as the charity can't afford specialist marketing to raise awareness, as employed by larger charities, and it is therefore increasingly difficult to raise the amounts needed to help our children. Anything anyone can do to help would be so appreciated.
For more details visit http://www.cystinosis.org.uk
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