Thanks for taking the time to visit my JustGiving page. As you probably know I have 2 daughters with this incurable disease. Id like to raise at least £200, if I do I will shave ALL my hair off. If we raise £300 my partner, Darren, is going to have his chest WAXED. If we raise £400 his legs will then be waxed!! When we raise £500 I will do something else, maybe dye my hair pink! I'd like to raise £1,000 before my eldest daughters 3rd birthday in October. Her baby sister is 1 in May so hopefully people will donate then to :)
WHAT IS CYSTINOSIS?
Cystine is an amino acid of which Cystinotics possess too much. Cystinosis occurs when the mechanism, which removes excess cystine, breaks down. It then accumulates within body cells preventing these cells from functioning correctly. (Recommended reading is “Cystinosis An Information Booklet for Families” by Geraldine Ward). This initially leads to kidney problems and progresses to other parts of the body, including the thyroid gland, eyes and liver. Impaired growth is yet another symptom of the condition. In the past, it was rare for Cystinotics to survive into adulthood.
However, with better understanding and earlier diagnosis, it is possible for sufferers to lead a longer, fuller life. It is one of the Foundation’s aims to help sufferers manage their Cystinosis effectively in order to lead a fuller life.How Common is Cystinosis?
Cystinosis is a rare inherited disease with an incidence, in developed countries, of about 1 case in every 200,000 live births. This figure may not be entirely accurate since it relies on the condition being recognised and reported.What Can We Do About Cystinosis?
Currently, there is no cure for Cystinosis. However, the Cystinosis Foundation UK is helping to support research that will help in finding a cure and improving the medicines we have to treat Cystinosis. Whilst Cystinosis manifests itself in different ways and its effects can vary in severity, medicines are available to help manage Cystinosis on a daily basis. But naturally, every individual is different.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please, please donate now. Your donation could help find the CURE!