RAWS Raising Awareness for Williams Syndrome

What is Williams Syndrome?

WS is a rare, non-hereditary genetic disorder which occurs at random and affects around 1 in 18,000 people in the UK. It is caused by an abnormality in chromosome 7, and shows a wide variation in ability from person to person.

The condition is characterised by mild to moderate intellectual disability, unique personality characteristics, distinctive facial features, and medical issues including cardiovascular disease.

 

Why are we fundraising?

We are fundraising to raise awareness for WS. Most people have never heard of this condition and only about 1 in 30 GP’s will ever meet somebody with Williams Syndrome in their lifetime.

Because it is so rare, medical professionals, teachers and caring professionals are often unaware of it’s unique characteristics. Families often face barriers to access early intervention and therapies. We want to raise awareness in wider society to help those with Williams Syndrome to reach their full potential.

Our son Teddy was diagnosed with WS at 7months old. Despite numerous health issues, his diagnosis was missed by many medical professionals that he came into contact with. It was only after months of my incessant research and requesting that he be tested specifically for WS that we received his diagnosis. He has been fighting since day 1, with more hospital appointments and tests than I could ever put a figure on. He’s spent hours in therapies, being poked and prodded, and has recently undergone open heart surgery. He takes absolutely everything in his stride. Despite the pain he has endured and anxiety he lives with, WS makes him irrepressibly friendly, unconditionally loving and indiscriminately trusting of anybody he meets. 

How will the funds be spent? 

All funds raised will make a direct difference in the lives of children and adults with WS, helping them to achieve their hopes, dreams and wishes. 

We will also give a percentage to the Williams Syndrome Foundation - a UK charity which promotes research and funding, and provides help and support for families with affected children.