CKS are raising money for Williams Syndrome.

Lucy's little boy Finley got diagnosed with Williams Syndrome (WS) at 8 weeks old. He was diagnosed with a few heart defects and then a genetic Dr reviewed him and his case and knew straight away he had WS.

Heart defects affect up to 80% of individuals who have Williams Syndrome with the most common issues being narrowing (stenosis) of blood vessels, especially the aorta (supravalvar aortic stenosis) and pulmonary arteries, these defects are the biggest risk of early mortality. Unfortunately Finley has both of these.

What is it?

Williams Syndrome is a rare congenital disorder that occurs randomly and affects around one in 18,000 people in the UK. It is non-hereditary and causes distinctive facial characteristics and a wide range of learning difficulties. Infants often have delayed development and can develop physical and mental health problems, including anxiety and depression in later life. WS people tend to be talkative and excessively friendly towards adults.

Treatment

There is no cure for Williams Syndrome because it is not an illness, and there is no way to prevent the genetic abnormality that causes it. Early diagnosis will not prevent potential problems but can lead to a better understanding and better assistance for the child. There may be raised levels of calcium (hypercalcaemia) in the blood within the first two years of life – in these cases, a low-calcium diet can stabilise the situation. Some WS children are educated in mainstream schools with assistance but the majority require the support offered in specialist schools.

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