I am a very proud Aunty to an amazing niece called Clover.  Clover is 9 years old and one of the funniest, most positive children you could meet.  Her irreverent sense of humour is infectious, as is her zest for life and determination to overcome any obstacle.  She is a very special girl in her own right, and not just because she suffers from Primary Ciliary Dyskinesia (PCD). 

PCD does not define Clover, but it does affect her daily life.  PCD is an extremely rare syndrome (only 3,000 people in the UK have been diagnosed) in which sufferers have abnormal 'cilia', the microscopic hairs that beat within the airways which remove secretions from the respiratory tract. The condition affects many organs in the body, but the main risk is lung disease if left untreated, or discovered late.  There is no cure for PCD .

Clover's diagnosis was relatively late and her treatment involves chest physio 3 times a day, nebulised treatments, regular oral antibiotics and hospital admissions for 2 weeks at a time for intravenous antibiotics.  She embraces these treatments with typical courage and humour, and is a well-known and popular patient at the John Radcliffe Childrens' Hospital, where she has received so much fantastic care.

Not only is PCD rare and hard to diagnose but it does not attract serious funding.  The PCD Support Group does important work by not only supporting affected families but raising awareness of PCD within the medical community to influence earlier diagnosis, correct treatment and a better quality of life for sufferers.

I'm very aware that there are many worthy causes and fund-raising events, so I'd like to thank you for taking the time to read this and for any donation you are able to make.

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