Thank you for taking the time to visit my JustGiving page.

This is my little friend Edward.  Edward has Cystinosis.  Cystinosis is a rare genetic disease that affects approximately 150 people in the UK, and about 2,000 people worldwide. This disease causes the amino acid “cystine” to accumulate in the body’s cells. Over time, cystine buildup slowly destroys various organs including the kidneys, liver, muscles, white blood cells, eyes and central nervous system.
 
Every day Edward undergoes a gruelling regime of drugs, eye drops and supplements which in themselves have many unpleasant side effects.
 
Because Cystinosis is such a rare disease that affects such a small population, research money is scarce to nonexistent. 

Currently there is no cure for Cystinosis. In the past it was rare for Cystinotics to survive into adulthood but thanks to charities such as the Cystinosis Foundation UK there is real hope for sufferers. The organisation funds research into the condition, provides support and advice for patients and parents and raises awareness of Cystinosis among the medical community.
 
On Sunday 5th December (Edward's 2nd birthday) Chris and I completed the Singapore Half Marathon...check out the dodgy pictures!  Our battle is over (phew!) but Edward's is just beginning.  If you would like to give children like Edward a chance, please sponsor me.  All monies raised will go to the Cystinosis Foundation UK.  This page will be active until the beginning of March so you have plenty of time...

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 Cystinosis Foundation UK and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer.  It’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.