Cystinosis is a rare genetic disease that affects approximately 150 people in the UK and about 2000 people worldwide. It causes the amino acid ‘cystine’ to accumulate in the body’s cells. Over time this destroys various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system. Very few people have heard of Cystinosis, including many medical professionals.
Edward is seven years old. He was sick from birth but was only diagnosed with Cystinosis when he was 14 months. Every day he undergoes a gruelling regime of drugs, eye drops and supplements which have many unpleasant side-effects including nausea and vomiting which Edward has to deal with daily.
Tim just wants to raise funds to give Ed, and his family, a couple of really nice days out and we are asking you to help us do that rather than to buy Tim a gift for his big day.
Because Cystinosis is so rare and affects such a small population, research money is scarce to nonexistent.
Currently there is no cure. In the past it was rare for people with Cystinosis to survive into adulthood but thanks to charities such as Cystinosis Foundation UK there is real hope. The organisation funds research into the condition, provides support and advice for patients and families, and raises awareness of Cystinosis among the medical community.
Nicola Chapman started crowdfunding
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Tanya & James xx
Nov 28, 2016
Happy birthday Tim. Hope Ed has a fantastic day out! Lots of love xx
Nov 27, 2016
Happy Birthday to a wonderful man. Thank you for a lovely day. We hope Ed and his family have the best time. Lots of love, Ryan, Georgie and Beatrix. Xxx
Nov 27, 2016
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