My 6 year old daughter Rosie was born with Prader Willi Syndrome (PWS) which is a rare genetic disorder affecting 1 in 15,000 children. 

It’s a complex and challenging disorder, which is considered to be life limiting as it will be detrimental to her health and quality of life going forward. 

The impact of PWS is wide ranging, it affects the body in many different ways, but the most dominant feature of PWS is hyperphagia, where the person can never feel full and always feels like their body is starving. There is no communication between the brain and stomach so they always feel hungry and can constantly food seek or eat extreme levels of food to try and satisfy this hunger. 

This insatiable hunger is life-limiting, and the mass majority of adults
with PWS struggle to live independently as food presents a real danger to their health. 

This awful hunger kicks in between the ages of 2-8yrs old in most cases, so we are waiting and watching to see what will develop with Rosie and to what extent. Every meal time, every snack time, it is there, that worry in the back of my mind. I want to try and do everything I can for her future happiness.

At present there is no cure and very few treatments to improve quality of life for people with PWS. The best hope that Rosie has of an independent life is what gene therapy and research could provide. At the moment researchers are working hard to understand the ‘PWS hunger gene’ in particular, and trying to learn to switch off or minimize the effects of hyperphagia, which would be life-changing for anyone with PWS.

Please help me raise valuable funds for the Foundation for Prader Willi Research as it is Rosie's best hope of an independent future, free of hunger.

Thank you, 

Helen Patience

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For more information about PWS research and my chosen charity: https://www.fpwr.org/gb/

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