In August 2017, after a straightforward pregnancy, Iwan, our second child arrived. He was floppy, he couldn’t cry, feed or move.  Three weeks later, after a stay in Neonatal Care,  we had a diagnosis of Prader Willi Syndrome (PWS) which rocked our world and not in a good way. 

Today, as many of you know, Iwan is a thriving, happy, loveable almost 3 year old. He has done nothing but completely amaze us since those early days and we are so so proud of him. He loves going to nursery with his pals, jumping in puddles, annoying his big sister and has a wicked sense of humour....but we need to support his future to be as independent as possible. Not many people with PWS can be fully independent as it stands due to the complexity of this condition. Hyperphagia, an abnormally increased appetite, being the most well known symptom that develops over time, although there are other difficulties, also of varying severity, caused by this condition. 

Fortunately research into PWS is gathering pace - it’s so positive and really exciting. Research is the reason he has daily growth hormone injections, so we know it makes a difference. As his parents we want to support and accelerate this so that Iwan can have a brighter and hopefully more independent future. We would really be so grateful if you would sponsor us on our run this October. We are aiming to raise £1000 for The Foundation for Prader Willi Research UK.  This charity provides funding for clinical trials in order to develop more effective treatments, aimed at reducing and eliminating some of the challenges of PWS. With your help Iwan and other kids with this condition have a really bright, exciting future ahead of them ......dig deep people & we promise not to hassle you again for a while 😜😘