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Nicola Chapman raised £690 from 15 supporters
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Closed 09/12/2016
Weʼve raised £690 to Give Ed and his family a day out to remember forever
- Funded on Friday, 9th December 2016
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Story
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.
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Supporters
15
Tanya & James xx
Nov 28, 2016
Happy birthday Tim. Hope Ed has a fantastic day out! Lots of love xx
£40.00
Georgina Palmer
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
£30.00
Jack Chapman
Nov 27, 2016
£30.00
Lucy Smithson
Nov 23, 2016
Happy 60th to my very special Dad! This just reiterates what a wonderful man you are. Have a great time Ed - sending much love from Luc, Florence & Henry xxx
£50.00
Anonymous
Nov 21, 2016
Thank you for a fabulous day, totally enjoyed be part of your celebrations, lots of love Julie and Mike xx
£30.00
Anonymous
Nov 21, 2016
Have a lovely day out Ed. Happy birthday Tim. Tony & Paddy
£20.00
Tom Daniels
Nov 21, 2016
Thanks for a wonderful day yesterday, we hope Ed has a brilliant day out.Love Tom and Amy
£30.00
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