<p><span lang="EN"> <p>Cystinosis is a rare genetic disease that affects approximately 150 people in the UK and about 2000 people worldwide. It causes the amino acid &lsquo;cystine&rsquo; to accumulate in the body&rsquo;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.</p> <p>Edward is two and a half 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.</p> <p>Because Cystinosis is so rare and affects such a small population, research money is scarce to nonexistent.</p> <p>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.</p> <p>We plan to raise money through various avenues but please feel free to donate at any time. All of the money raised will go to the Cystinosis Foundation UK. Where possible, please Gift Aid your donation.</p> </span></p>